By Mohamed Hasham

In celebration of International ThalassemiaDay, the Thalassemia Foundation of Canada(TFC) worked in cooperation with a localRunning Room to hold its third annual Walk-for-Thalassemia fundraiser on Sunday, May5, 2013. The walkathon is an opportunity forthe thalassemia community to raiseawareness, support and funds towardsresearch on treatments – and ultimately, acure – for the disease.

The event, held at Ester Lorrie Park inEtobicoke, was once again a great success,with over a 100 people – including patients,their relatives and friends, and medical staff– in attendance. Everyone had an opportunityto catch up and chat with friends both beforeand after the walk, while Rob’s DJ playedTop 40 hits on the turntable.

Participants were blessed with a bright,sunny day on which to walk or run the five-kilometre or (Continued on pg. 14)

On Saturday, February 16, 2013, theThalassemia Foundation of Canada held its24th annual Valentine’s Dinner Dance. Theformal gala is the organization’s largestfundraiser, and this year was no exception, asover 500 guests attended the event. Fundsraised at the dance go towards supportingthalassemia patients and their families, and toassist in funding research on treatment forthe disease.

Similar to the dance in 2012, this year’sfunction was held at The Royalton banquethall in Woodbridge, Ontario. As guestsentered the hall’s foyer they were able toperuse the stunning accessories available forsale at the jewellery kiosk, buy their tickets

for the 50/50 draw, and make theirpreliminary selections of the exclusive itemsup for bid in the silent auction.

As the deluxe antipasto bar opened andguests started enjoying the delicious food onoffer, they were entertained by BluSoul, atalented quartet of Motown singers whoregaled the crowd with hits like On BendedKnee and Hey Girl.

The Masters of Ceremony, Angela Marra-Sudano and Michael Mammolitti, officiallywelcomed guests to the event, and led themthrough the various portions of the evening,such as the drawing of the bountiful raffleand door prizes (Continued on pg. 16)

NEWSLETTER OF THE THALASSEMIA FOUNDATION OF CANADA

24th Annual Valentine’s Dinner Dance

Winter2013-14

Guests enjoy the deluxe antipasto bar at the 2013 Valentine’s Dinner Dance

Third Annual Walk-for-Thalassemia

I n Th i s I s s ue

2013 Valentine’s Dinner DanceA major donation is announced at theTFC’s signature fundraising event.

1

Walk-for-ThalassemiaThe TFC’s newest fundraiser is a

runaway success!By Mohamed Hasham

1

Medical NewsCan a blood pressure pill help stop

iron overload in the heart?By Dr. Kevin Kuo

3

The Naushy MullaniTravel Award

A past TFC Board member ishonoured with a new award program.

By Helen Ziavras4

Poking the Chronically PokedAn informative report from a

nurse’s perspective.By Kathy Grouchy, RN

6

Donor CornerA spotlight on fundraiser

extraordinaire Fame Risorto.By Silvia Livia and Fame Risorto

8

Update – ThalassemiaInternational FederationNews on the conference in the

United Arab Emirates.By Riyad Elbard

10

Roma Fence Golf InvitationalFore! Supporters swing into action for

the 17th annual golf fundraiser.15

Bowling for ThalassemiaThe fun-filled event proves how

successful third-partyfundraisers can be.By Fame Ristorto

19

Third Annual Pig RoastThe Simoes family’s delicious recipessteal the show at this year’s event!

By Fame Risorto19

BOARD OF THETHALASSEMIA FOUNDATION

OF CANADA

EXECUTIVE DIRECTORS

PRESIDENTHelen Ziavras

IMMEDIATE PAST PRESIDENTRiyad Elbard

VICE-PRESIDENTSilvia LiviaTREASURER

Christina MarraSECRETARYMary SiomisTRUSTEES

Bessie CalabriaTony Falcitelli

Mohamed HashamStefanie PolsinelliAmedeo SalituroEnza SalituroTony Tsao

HONOURARY LIFETIMEMEMBERS

Tony Marra Angela Polsinelli

BOARD MEMBERSJosie Cumbo

National President,Order Sons of Italy of Canada

Dr. Douglas TempletonUniversity Health Network

Chair, Medical Advisory Board

Angela CovatoCoordinator,

Medical Advisory Board

CHAPTERSAnita AimolaPresident

Guelph Chapter

THALAVISION

EDITORStefanie PolsinelliDESIGN & LAYOUT

Brian Boyd

CONTRIBUTORSJosephine BilaRiyad ElbardTony Falcitelli

Mohamed HashamDr. Kevin KuoSilvia LiviaFame RisortoHelen Ziavras

Print and Production ofThalaVision donated by

Basset Direct andSignature Bindery Services

2

President’s MessageAs I think of all the events that brought me to this point... the first

thing that comes to mind is that it all started for me in the mid-80s,when I was invited by a group of patients one weekend to aThalassemia Action Group (TAG) meeting in New York. I met themost amazing people who I could relate to and who understood myemotional struggles. Our discussions were based on similar concerns

and issues: trying to stay compliant with the "treacherous" Desferal (at the time), fear ofthe future, fear of needles, fear of dying, fear of someone finding out about your illness,fear of feeling vulnerable, etc. By the end of it all we were one big family and they allmade me feel that I belonged somewhere.

That weekend changed my life. Returning home, so many thoughts swirled around inmy head and one of them was to start a much-needed Canadian TAG group in Toronto,the city that, by far, has the largest population of thalassemia patients in Canada.Shortly after this, I became involved in the founding and creation of what was then theOntario Thalassemia Foundation – which subsequently evolved into the ThalassemiaFoundation of Canada, to better reflect our organization within Canada. The rest, asthey say, is history!

At the time when the Foundation was first created, there was no social media youcould rely on to share information, and the only forms of communication available,really, were mail and telephone. So it took longer to get in touch with people and alsotook more time and effort – especially since we were working with limited resources.Thankfully, things changed in the early 90s when email was introduced and we werebetter – and more quickly – able to exchange information with people. The fact thatwe can now educate patients on the management of thalassemia at the click of abutton speaks volumes about how times have changed! I believe that knowledge ispower and that sharing ideas and resources will bring us closer together in ourcommon goal to eventually find a cure for thalassemia. With so many communicationtools available to us now, there should be no reason for people not to reach out toothers. We must continue to work together here in Canada and with other countries, aswell, noting that we are all part of a global community sharing the same fears, hopesand needs. The future seems a lot brighter today than any other time previously, andwith everyone's continued contribution and dedication to this cause we will reach ourgoal and get closer to a cure.

My vision for the TFC has always been for it to be a strong voice and advocate forour patients. I would also like to see all of our thalassemia treatment centers in Canadabe resourced adequately in order to provide the best possible treatments and care for thebenefit of our patients. After all, our patients are the heartbeat of this organization.

Only with strength in numbers will the TFC be able to make a difference and have astrong voice around the globe. If you have a skill which you would like to contribute; an ideayou want to share; a concern you would like heard; or you would like to volunteer for one ofour many fundraising or social events, please email me at helen.ziavras@thalassemia.ca. Iwould love to hear from you. Also, you can visit the TFC website at www.Thalassemia.ca forup-to-date information on all our events and thalassemia news.

On February 22, 2014, we will be marking our 25th anniversary of the Valentine's DinnerDance. A lot of hard work and effort is being put into this event as it marks a milestone fromour very humble beginnings. If you haven't yet been to one of our dances make sure not tomiss out on this one – and bring your family and friends, as it promises to be the best gala yet!If anyone would like to donate any door/raffle prizes, we would be most grateful for anycontributions. Please contact Christina Marra, Event Chairperson, at (Continued on next page)

Winter 2013-14 3

(Continued from page 2)cmarra@RomaFence.com for details.For more information on the event,please see the advertisement listed in thisnewsletter. I look forward to seeingeveryone there as it promises to be anunforgettable evening!

I would like to take this opportunityto thank Riyad Elbard, Past President,for his many years of hard work,dedication and outstanding contributionsto the Thalassemia Foundation ofCanada. I know how much time andenergy he has put forth in ensuring thatthe TFC maintains its current status bothhere at home and internationally. I wouldalso like to acknowledge the outstandingleadership he has provided over theyears, and express my deep appreciationfor all of his efforts. I wish him all thebest in his future endeavors. Riyad hasdecided to stay on as a Board memberand we all look forward to his continuedcontributions.

Finally, I would like to thank eachand every one of you for your generousdonations, continuous support anddedication to our cause. I look forward toachieving the goals we have outlined forthe Foundation and am excited aboutworking on some new initiatives we willbe undertaking. This will be done withan even stronger and continuedcollaboration of efforts and unity amongthe thalassemia community and itsaffiliates. I am confident that everyonewill continue to do his/her little part inreaching out and supporting the TFC inorder to ensure that the vision we createdmany years ago to help find a cure is notlost, but rather strengthened. I wish youall a safe and healthy holiday season.May the new year bring us closer to ourgoals and to a long-awaited cure.

Helen ZiavrasPresident Thalassemia Foundation of Canada

By Dr. Kevin Kuo

Iron overload in the heart is amajor problem with deadlyconsequences in individualswith thalassemia. In 2003,Dr. Maria Trivieri, incollaboration with Dr.Gavin Oudit, a clinicianscientist at the Universityof Alberta and under thedirection of Prof. PeterBackx, a scientist at theUniversity of Toronto,discovered that acommonly used bloodpressure medication calledAmlodipine may prevent ironoverload. In mice injected withiron to mimic iron overload inthalassemic individuals, those treatedwith Amlodipine had less ironoverload in the heart compared to micethat were not on the medication.Whether this would work in patientswith thalassemia remained untesteduntil last year, when Dr. Trivieri, now acardiology fellow, brought this excitingfinding to the Red Blood CellDisorders clinic run jointly with thecardiologists at Toronto GeneralHospital. This serendipitous encountergave birth to the CANALI trial, arandomized controlled trial in whichpatients enrolled in the study willeither continue on their regular ironchelation (control) or will berandomized to receive Amlodipine inaddition to their regular iron chelation

(intervention) for one year. At the endof the study, differences in the amountof iron in the heart as well as heartfunction will be measured between thetwo groups. The hope is that patientswho are on Amlodipine will see agreater improvement in their heartfunction and iron overload comparedto patients on an iron chelatoralone. The organizers of the study arecurrently obtaining Health Canada andResearch Ethics Board approval andexpect the trial to start recruitment byJanuary 2014. Questions regarding thestudy are welcome, and can besubmitted to Dr. Kevin Kuo atkevin.kuo@uhn.ca.

CAN A

BLOOD PRESSUREPILL HELP STOP IRONOVERLOAD IN THE

HEART?

4

The 2013 Corrado FalcitelliScholarship AwardBy Tony Falcitelli

In memory of Corrado Falcitelli, one of the pastpresidents of the Thalassemia Foundation of Canada(TFC), the Falcitelli family and the TFC have created ascholarship award. This scholarship is awarded to aCanadian citizen with thalassemia major or intermediawho is registered in a full-time post-secondary educationprogram. The purpose of this award is to provide anincentive to patients who are continuing their education.We hope this scholarship will inspire and motivatepatients to reach their education and career goals.

The winner of this year’s Corrado Falcitelli MemorialScholarship Award is Amana Begum of Toronto, Ontario.Begum immigrated from Bangladesh in 2006, and iscurrently enrolled in the Nursing degree collaborativeprogram between York University and Seneca College. Wecongratulate Amana Begum on winning this award andwish her success in her future education and career goals.

2013 Secondary StudentExcellence AwardThe Secondary Student Excellence Award is given to a

Canadian secondary school student with thalassemia major.The purpose of this award is to recognize thalassemiapatients who demonstrate determination, commitment, andenthusiasm. These qualities can be revealed through thecandidates’ academic achievements, extracurricularactivities and volunteer work. The Thalassemia SecondaryStudent Excellence Award is intended to motivate andencourage thalassemia patients to continue to work throughlife’s challenges, contribute to their community, and sharetheir talents/gifts with others.

The winner of this year’s Secondary StudentExcellence Award is Cody Chau of Vancouver, BritishColumbia. Chau is part of the Gladstone SecondarySchool concert band and the badminton team. He alsovolunteers at the Cedar Cottage Neighbourhood House,and plans to pursue a Law & Business degree. Wecongratulate Cody Chau on winning this award and wishhim success in his future educational and career goals.

The due date for the 2014 Corrado Falcitelli MemorialScholarship Award and the 2014 Secondary StudentExcellence Award is January 24, 2014. We encourage allsecondary and post-secondary students to apply. Pleasevisit www.Thalassemia.ca for details.

The Naushy Mullani Travel AwardBy Helen Ziavras

I am honoured to introduce to you the Naushy Mullani Travel Award.The award was created by the Mullani family in memory of theirbeloved family member – and past Board member of the ThalassemiaFoundation of Canada – who passed away on October 20, 2008.

The purpose of this award is to provide assistance to thalassemiapatients considering travelling in order to educate themselves oncurrent developments in thalassemia treatment and research aroundthe world, meet the medical professionals who specialize in thefield, and attend workshops and share stories with others goingthrough the same experiences. The award will be administeredthrough the Thalassemia Foundation of Canada and is set up tosponsor a thalassemia patient in order for him/her to attend a NorthAmerican or international conference.

Naushy was in the travel industry and loved to go abroad andmeet new people, experience different cultures and share with othersthe information she had learned on her journeys. She had theopportunity to attend a number of Thalassemia InternationalFederation (TIF) conferences, and always returned enthusiastic andfull of new knowledge to share with her peers. The Mullani familyhas created this award to honour her memory and allow others tohave similar experiences.

We had a high number of applicants wanting to attend the TIFconference in Abu Dhabi this past October, with the assistance of theNaushy Mullani Travel Award. It was very difficult to select onlyone candidate and, thus, the Mullani family decided to send twopatients to the conference. The winners of the 2013 Naushy MullaniTravel Award are Jude Kamal from Toronto and Salim Amlani fromCalgary. Each received up to $3,000 towards their travel andaccommodations. Congratulations to them both! We look forward tolearning all about their wonderful experiences in the next issue ofThalaVision.

To obtain a copy of the sponsorship letter outlining the detailsof this award, as well as an application form for anyone interestedin applying to attend future conferences and meetings, please visitwww.Thalassemia.ca.

Helen Ziavras and Naushy Mullani

Winter 2013-14 5

Thalassemia (derived from thalassa andanaemia, Greek for "sea" and "lack ofblood,” respectively) is a genetic blooddisease, also known as Cooley's anemia, orMediterranean anemia. People bornwith this disorder cannot makenormal hemoglobin, which isneeded to produce healthy red bloodcells.

WHO CARRIES THALASSEMIA?

Thalassemia is most often foundin people of Chinese, South Asian,Mediterranean, Middle Eastern, orAfrican origin.

WHAT IS THALASSEMIA MAJOR?

In thalassemia major, red bloodcells are destroyed almost as soon asthey are produced, and the bonemarrow cannot produce a sufficientnumber to replace them. Childrenborn with thalassemia major usuallydevelop the symptoms of severeanemia within the first year of life.Lacking the ability to producenormal adult hemoglobin, thosewith thalassemia major experiencechronic fatigue, paleness, jaundice andslower growth development. Prolongedanemia will cause bone deformities andeventually lead to death within the firstdecade of life. The only treatment tocombat severe anemia is regular bloodtransfusions and iron chelation.

WHAT IS THALASSEMIA INTERMEDIA?

Thalassemia intermedia is caused byone of the more severe thalassemic genescombined with a milder thalassemicgene. Children and adults living withthalassemia intermedia are moderatelyanemic but many patients survivewithout regular blood transfusions.

WHAT IS THALASSEMIA MINOR?

People with a thalassemia mutation inone gene only are known as carriers or aresaid to have thalassemia minor.

Thalassemia minor results in no anemia orvery slight anemia. People who are carriersdo not require blood transfusions or irontherapy, unless proven to be iron deficient.

HOW CAN THALASSEMIA BE TREATED?

Regular blood transfusions allowpatients with thalassemia to grownormally and be active. Unfortunately,transfusions result in excess iron in thebody. Excess iron in vital organsincreases the risk for liver disease, heart,endocrine and spleen complications,diabetes, osteoarthritis and osteoporosis– to name just a few. In some cases, itcan also lead to premature death.

Today, iron chelators (drugs designed toremove excess iron) have significantlychanged the prognosis of thalassemia.Patients can grow and develop normally,with relatively normal heart and liverfunctions. Patients are living longer andhaving families of their own. Medicaladvances continue to improve the lifeexpectancy and quality of life for thoseliving with thalassemia. Treatments that

are especially promising for the futureinclude gene therapy, bone marrowtransplants (in which donor bone marrowis inserted into the patient's bones and

begins producing normal, healthyblood cells) and cord bloodtransplants (in which stem cellsrather than bone marrow cells areused in the procedure).

DO YOU CARRY THALASSEMIA?

Many people from the areas ofthe world where thalassemia iscommon have thalassemia minor.Checking for thalassemia requires aspecial blood test, calledHEMOGLOBINELECTROPHORESIS, which youmust request from your doctor. Thistest can identify a carrier ofthalassemia. If you, your parents orancestors are from an area of theworld where thalassemia iscommon, PLEASE REQUEST ahemoglobin electrophoresis bloodtest from your doctor. It isimportant to identify yourself as a

possible carrier of thalassemia. Carriershave a one in four (25%) chance withevery pregnancy of having a baby withthalassemia major if his/her mate alsohas thalassemia minor.

HOW DO YOU INHERIT THALASSEMIA?

Thalassemia is an inherited geneticdisease. It is not transmitted throughblood, air or water. It cannot be causedby poor nutrition or medical conditions.If both parents carry thalassemia minortheir children may have thalassemiaminor, they may have completely normalblood or they may have thalassemiamajor. In each pregnancy there is a onein four (25%) chance that their child willhave thalassemia major, a two in four(50%) chance that the child will havethalassemia minor and a one in four(25%) chance that the child will havenormal blood (see Diagram).

The combination of one gene from the mother and one from the fatherleads to three different types of thalassemia: thalassemia major,thalassemia intermedia or thalassemia minor

A Parent withThalassemia Minor

Thalassemia Major/lntermedia

ThalassemiaMinor

NormalBlood

A Parent withThalassemia Minor

ThalassemiaMinor

What isThalassemia?

26

Vascular access (VA) for

hemoglobinopathy patients

can be a challeng for nurses

and patients. Patients with

thalassemia and sickle cell

disease (SCD) on chronic

transfusion therapy require

peripheral VA every month of

their lives. In order to sustain

life, they will need to have

multiple blood transfusion or

exchange transfusion

procedures. The veins of

thalassemia and SCD patients

are precious and considered

to be their lifelines.

Although blood transfusions givepatients life, VA can be challenging,painful, and emotionally traumatizing ifmultiple venipunctures (pokes) arerequired. It can result in increasedanxiety, limit future VA, require anindividual care plan or a referral to apsychologist, and affect the patient'squality of life. Unsuccessful VA can befrustrating and stressful for the patient,family, and nurse. These experiences canremain with the patient and be carriedinto adult life. Peripheral VA for chronictransfusion patients requires great skilland expertise on many levels.

Patients

Patients become experts on their ownveins and often know best which veinswork and which do not. They oftendevelop hopes and expectations that it

will take no more than one or two pokes.Early in their lives they get used to

differentstaff, skill levels, and techniques. Theyknow who has good skills and will tellyou if the VA team is needed. Some

patients will choose their own sitedepending on who performs the VA. Oneteenage patient reported, “I know thereare only a few that can get my vein, andif they are not there I use [the antecubital]vein: I learned the hard way.”

Another patient reported, "There wasa time when I was getting up to fourpokes on a bad day... It is veryfrustrating, and it hurts! I have had morethan 500 pokes!”

Coping

Patients receiving regular transfusiontherapy learn to cope with needles earlyin life. Children develop a tolerance forpain, often choosing to stop theapplication of topical anesthetics. Theylearn to cope with one or two extrapokes; however, if a procedure results inthree or more, all the courage they sobravely demonstrated plummets,resulting in an inconsolable child. At thispoint, VA success becomes increasinglydifficult. Although it is rare, somepatients become so anxious andtraumatized that they have to returnanother day. Some are tearful after the

first unsuccessful attempt. It is importantto be aware of patients' coping ability inorder to provide the support they need.One child said after two unsuccessfulattempts, "You did not say you weresorry for poking me!"

The early years are an extremelycritical time to prevent needle phobias byensuring VA does not take multipleattempts. Some strategies to ease thestress and improve coping ability include

Teaching relaxation and distractionstrategies and taking the time to findout what will work for each child

Involving and communicating with thechild life specialist or psychologist

Applying topical anesthesia if it doesnot affect the vein

Apologizing if you have to poke themmore than once

Praising them for having strength andcourage.

Children can be distracted with toysthat require only one hand to operatewhile the other hand is being accessed.As the child grows, parents often stepaside, allowing them to takeresponsibility for the VA procedure.Parents and nurses are pleased andrelieved when children cope well. Apositive experience influences future VAprocedures.

Veins

What makes VA so challenging? Itbegins with the overall clinical conditionand vein anatomy of the patient. Allpatients, regardless of the quality of theirveins, can have poor experiences.

There are physical and psychologicalissues that can affect the veins, includingsevere anemia, dehydration, acuteillness, sickle cell crisis, small or fragileveins, needle phobias, veins that are not

Vascular Access in Patients with Hemoglobinopathies

Poking the Chronically PokedKathy Grouchy, RN, Vascular Access/Apneresis Procedure Nurse, Hematology/Oncology/Bone Marrow Transplant ProgramOutpatient Clinic, British Columbia Children’s Hospital

There was a timewhen I was getting up tofour pokes on a bad day...It is very frustrating, and ithurts! I have had morethan 500 pokes!

“

“

Winter 2013-14 7

visible/palpable, weight, age, inability to hold still, and anxietyor tenseness, which causes vasoconstriction or venospasm. Asthe child grows, veins can become increasingly painful, sting,roll, be scarred, or fail to cannulate.

On rare occasions, insertion of a central venous access device(CVAD) is necessary until the veins recover. In my experience,four patients have required CVADs during the last 20 years.Providing individual and appropriate care for all patients isessential, especially for difficult VA. Not everyone willsuccessfully achieve the peripheral VA.

Vein sites

Dorsal hand sites are more visible or palpable in babies andsmall children. Forearm veins become more developed in teensand adults, freeing the hands for activities such as schoolwork.However, these veins can roll and nurses often lack confidencein attempting these veins.

It is important to determine patient preference or discuss withthe patient his or her comfort. For example, "I don't know if Ican get that particular site. Would you be willing to try anothersite?” Patients become attached to their veins. It may take somediscussion with the patient if you want to use a site with whichthey are uncomfortable. Children as young as 4 years old willtell you which hand they prefer. It is sometimes possible to besuccessful using the same vein repeatedly for months before thevein needs a rest.

Nurses Should Know the Patient, Know the Vein

Patients may receive treatment at the same clinic for theirentire childhood. Nurses can be successful in not only knowingthe patient but also knowing his or her veins.

Below are three key strategies to prevent multiple pokes.

Develop nurse-patient rapport. Patients who trust theirnurse tend to have less anxiety.

Develop VA skills. Not all patients are challenging;however, they can be for a nurse who lacks skill andconfidence, resulting in damage and bruising to theprecious vein, venospasm, or hematomas. Multipleattempts can result when the skill level varies. VA requiresregular practice. Chronic patients with a history of difficultVA require nurses who have strong venipuncture skills. It isimportant for nurses to acknowledge their limitations andseek an expert when attempting patients with VAdifficulties. Nurses should build their skills on patients witheasier access.

Communicate. Patients are experts, so they should beinvolved in the VA process and encouraged to communicatetheir needs.

Transitioning

Transitioning patients to adult care can be challenging andstressful. Patients will be leaving the nurses with whom theyhave grown up and developed trust. VA challenges can continue

through adulthood. Patients who had easy veins throughout theirchildhood report it can take two or three pokes as adults. Nursesshould assist patients in a smooth transition to the adult world.

Key points:

Communicate and liaise with the adult team.

Provide a written summary of the patient's VA history andcoping ability.

Consider the needle size. Is a larger gauge catheter requiredfor an elective transfusion?

Teach and encourage patients to advocate for themselves.

Tips for Success

In our program, every effort is made to ensure VA is a positiveexperience. VA standard guidelines are followed. Acommunication document includes information specific to eachpatient regarding VA.

Train a core group of consistent VA staff.

Listen to the patients; they know their veins.

Encourage patient involvement.

Check the history for previous sites used.

Assess the vein carefully.

Warm the vein.

Anchor veins that need good skin traction.

Document the access, number of attempts, and copingstrategies.

Use relaxation and distraction techniques.

Encourage patients to

• Get the vein ready (pump hand or warm the site)

• Develop strategies to reduce anxiety

• Drink extra fluids prior to coming to the hospital; failure to do so affects vein plumpness.

Conclusion

The goal is to provide a positive and successful VA experiencefor patients that they will remember for life. Every effort shouldbe made to preserve veins, prevent needle phobias, and minimizeemotional or psychological trauma to pediatric and adultpatients. Nurses must have well-developed VA skills, andconsistency should be provided when possible. Clinicians shouldclosely monitor VA to ensure quality of care. Patients' veins aretheir precious lifelines, and they will have to come back nextmonth to do it all again!

Excerpted with permission from APHON Counts: News for theMembers of the Association of Pediatric Hematology/OncologyNurses

1.

2.

3.

8

A Spotlight on Fame Risorto By Silvia Livia

What is it like, being a parent of a child with thalassemia?

Being the parent of a child (now adult) with thalassemiamajor has had its ups and downs. Many of the positive aspectsare a result of our son being born during a time of great progresswith the disease. His compliance with his chelation treatmenthas improved greatly as he changed from the Travenol pump (forwhich the medication had to be mixed nightly), to the CADDpump (which required nightly eight-hour subcutaneousinjections), to Exjade (for which all he has to do is take a fewpills daily). In addition, the fact that he can now have MRIs inlieu of liver biopsies is also a huge relief, since MRIs are non-invasive in comparison to the latter. Despite these advances,having a child with thalassemia major is a huge concern; there isalways a question as to what the future will hold forhim. Monthly blood transfusions come with concerns, first andforemost being the safety of the blood products. Beingoptimistic and taking things day by day is one way to keep fromgetting anxious about everything, for sure. Making myson aware that there is nothing he can’t achieve in life hashelped all of us feel a sense of normalcy, ironically. ��

What are some challenges your family has encountered,and how have you overcome them?

One of the biggest challenges we faced as a family, I feel, wasour son’s compliance with his iron chelation therapy. BeforeExjade, when he relied on subcutaneous injections, compliance wasa huge concern. Being a teenager, our son felt embarrassed to keepthe CADD pump on, particularly when socializing with friends, andjust started to become less and less compliant. At least now, withExjade, compliance is no longer an issue.

What advice do you have for other parents of thalassemiapatients?

Beinginvolved withyour children’s medicalcare is, of course, one of themost important issues. Another isthe mental wellbeing of yourchildren; positive reinforcement and makingthem believe that there is nothing they can’t do orachieve is critical to ensure happy, healthychildren. Reassure them that if they can’t achieve their goals in a“regular timeline,” they just need to take it slow and easy. Forexample, my son did not feel comfortable with his initial choicefor university. He then withdrew and went through a really toughtime adjusting and trying to make another selection. My way ofensuring he would go back to university was to tell him he couldtake 10 years to get through his post-secondary education aslong as he completed it. Education today is so important. I’mproud to say he has earned his business degree and is now in theprocess of completing post-graduate studies to become a teacher.

What are your hopes for the future – for your son and forthalassemia patients?

My hopes for my son are for him to have an amazing teachingcareer, find his lifelong partner, and have beautiful, healthychildren. It’s all about him: the reward I would get would be tosee him happy.

My long-term hopes for the future would be, of course, themfinding a cure for thalassemia. No child should endure chronicillness and a cure would be the ultimate goal for me as a parent.

What motivates you to host fundraisers, like the bowlingevent and the pig roast, for the Thalassemia Foundation ofCanada?

My motivation to host the fundraisers has been, first andforemost, to raise awareness. I must say, though, were it not forthe vision and support of my cousin Lisa D’Annunzio, alongwith so many other loving family members and friends – like my

Fame Risorto

CORNER

DONOR

Donor Corner highlights a differentindividual each issue who has donated a lotof his/her time and exerted extraordinary effortto raise awareness and funds on behalf of theThalassemia Foundation of Canada. These people

exemplify the meaning of hard work, fearlessness, and dedication to a common cause.

This issue of ThalaVision puts the spotlight onFame Risorto.

Fame is the mother of an adult thalassemiapatient. Fame and her family have been activelyinvolved in fundraising for the ThalassemiaFoundation of Canada for years; among theircontributions, they have hosted hugely successfulbowling and pig roast fundraisers (see page 19 fordetails on their latest events). The ThalassemiaFoundation of Canada extends warm thanks toFame and her family for their hard work, support,and dedication to its cause.

Fame sat down with ThalaVision to explainwhat it’s like to have a child with a chronic

illness, and why she’s so determinedto make a difference in the lives

of thalassemia patients.

Winter 2013-14

sisterMary, mymom and dad,my sister-in-law Rose,my dearest friends Rose,Rose, Angela, my cousin Lisa B.,and my niece Maria – we would nothave been able to host our fourth annualBowling for Thalassemia fundraiser. The Risortosare so blessed to have so many selfless people aroundthem; we can’t begin to thank everyone enough! Thanks to ourdear, dear friends Roger and Susan Simoes, what started as a funget-together with friends and family for an annual pig roast at theirbeautiful property in Bradford grew into so much more! Rogercame to my family one day and said, “Hey, why don’t we turn thispig roast into a fundraiser for the Thalassemia Foundation ofCanada?” Once my husband and I agreed, saying that would be verygenerous of them, Roger and Susan were off to the races, soliciting fordonations for food and so much more. It’s so much work for them, yetthey continue to do it year after year – we just had our third annualevent this August – and they do it all with big smiles on their faces,too! All they ask for is a small donation from guests. Between thebowling event and the pig roast, we’ve been able to raise over $50,000! Itjust shows you what caring and commitment can do.

THE MISSION OF THETHALASSEMIA FOUNDATIONOF CANADA

To support and fund thalassemia scientificresearch, treatment, patient services, publicawareness and education.

OUR GOALS

To provide patients and caregivers withaccurate and up-to-date information onthalassemia research and treatment.

To help patients navigate through thehealth care system, while providingbeneficial resources and support servicesto the thalassemia community.

To further research and innovation inthalassemia treatment and care.

A CURE REMAINS TO BE FOUND

Thalassemia is a lifelong condition thatpresents many unique challenges. Thephysical demands of the disease and theongoing medical treatment needed for itcan take a toll on patients and families,causing emotional distress and impactingthe overall effectiveness of treatment,survival and quality of life.

A cure needs to be found. Please do yourpart. Donate today.

THALASSEMIA FOUNDATION OF CANADA

340 Falstaff Avenue, Suite 204

North York, Ontario, M6L 2E8

Tel: 416.242.THAL (8425)

info@Thalassemia.ca Thalassemia.ca

Dear Friend,

We are extending an invitation to you, your family members, friends and workcolleagues to become a member of our organization, Thalassemia Foundation of Canada.

For years, the Thalassemia Foundation of Canada has successfully achieved itsgoals through the tremendous dedication of its Board members and other volunteermembers, and the support of generous donations from the public. Our team ofvolunteers consists of patients and non-patients who either serve on our Board oras general members; members donate their valuable time and effort toward theFoundation’s numerous activities and projects.

By becoming a member, you will assist the Thalassemia Foundation of Canadain continuing to support and fund thalassemia-based scientific research,treatment, patient services, public awareness and education.

The benefits of becoming a member, just to name a few, include: asubscription to the Foundation’s ThalaVision newsletter; voting rights at ourAnnual General Meeting held in April 2014; access to books, brochures andinformation on thalassemia; and detailed information on upcoming events andfundraisers.

In order to become a member for 2014-2015, please complete themembership information on the form found on the back page of thisnewsletter and mail it, along with a $10 membership payment, to the addressnoted below.

Donations along with your membership fee would be greatly appreciated.Your donations will bring us closer to reaching our ultimate goal of finding acure for thalassemia.

Thank you for your support.

Silvia LiviaVice-President, Thalassemia Foundation of Canada

SPECIAL UPDATE – Thalassemia International Federation

Thalassemia InternationalFederation (TIF) held its 15thTIF International Conference forParents & Patients and 13thInternational Conference onThalassemia &Hemoglobinopathies at the AbuDhabi National ExhibitionCentre in the United ArabEmirates from October 20 to 23.

The warm and generous Arabian hospitalitywas felt throughout the event, which washosted by His Highness Sheikh Sultan BinKhalifa Al Nahyan, Her Highness SheikhaSheikha Bint Saif Al Nahyan, the Royal Familyof Abu Dhabi, and the Emirates ThalassemiaSociety.

The Thalassemia International FederationWorld Congress 2013 included a series ofsuccessful events that constitute TIF’s majoractivities, drawing delegates of patients,parents, health care providers and medicalexperts from all corners of the world. TheCanadian delegation was made up ofthalassemia patients and families from Calgary,Toronto and Vancouver, including Dr. Hatoon

Ezzat and expert nurses and members of alliedhealth teams from Toronto and Vancouver.

The opening welcome by Panos Englezos,President of TIF, was followed by a briefpresentation by Dr. Androulla Eleftheriou,Executive Director of TIF, on the currentinitiatives and milestones of the organization.The keynote message by Sir David Weatherallhighlighted the fact that thehemoglobinopathies have been under-recognized for decades – both at the nationallevel in many countries and at the global level.Dr. Maria Domenica Cappellini then presentedon the milestones in hemoglobin research. Theceremonies were well attended by dignitariesfrom local governments of the United ArabEmirates and ambassadors of many countries.

Following the opening ceremonies, theSultan Bin Khalifa International ThalassemiaAwards were presented. The awards are ofextreme importance to the realization of TIF’svision and mission, as they are presented tocentres, groups of scientists or individuals fortheir contribution in this field. These awardsare an initiative of the H.H. Sheikh Sultan BinKhalifa Al Nahyan Humanitarian & ScientificFoundation, in collaboration with theThalassemia International Federation. Theprestigious awards have been established toprovide further motivation and encouragementto all those working in the research andmedical/clinical field to improve the health andquality of life of thalassemia patients and toaward those who have contributed uniquely tothe cause. This introduction of a major awardprogram also aims to bring thalassemia andother hemoglobinopathies to the forefront ofinternational political and health agendas. Theawards will be given every two to three years inthe context of TIF’s International ThalassemiaConference and will include national andinternational categories, with monetary andnon-monetary awards.

The members of the Higher Scientific

Members of the Thalassemia International Federation Board and otherdelegates in the United Arab Emirates

10

Committee for the selection of these awards includeProfessor Sir David Weatherall (UK), Professor GeorgeStamatoyannopoulos (USA), Professor DimitrisLoukopoulos (Greece), Professor Maria DomenicaCappellini (Italy), Professor John Porter (UK), ProfessorSuthat Fucharoen (Asia), and Dr. Androulla Eleftheriou(Cyprus). More than 300 applications were received forsix international categories and 15 national categories ofawards.

The Personality of the Year Award was presented to H.H. Sheikh Hamdan Bin Rashed Al Maktoum, DeputyRuler of Dubai and the Minister of Finance for theUnited Arab Emirates. The Sultan Bin KhalifaInternational Thalassemia Awards handed out were:

Scientific Achievement (USD$20,000 prize, shared) Prof. David Nathan (USA)

Prof. Phaedon Fessas (Greece)

Prof. Prawase Wasi (Thailand)

Leadership in Thalassemia (non-monetary award) Prof. Ali Taher (Lebanon)

Innovative Research in Thalassemia(USD $20,000 prize)

Prof. Michel Sadelain, Kettering Memorial CancerCentre (New York, USA)

Clinical Centre for Excellence (USD$20,000 prize) Thalassemia Center, Siriraj Hospital, MahidolUniversity (Bangkok, Thailand)

Thalassaemia Society ofExcellence(USD $20,000 prize)

Cooley’s Anemia Foundation(USA)

Scholarship for TranslationalResearch in Thalassemia(USD$60,000 prize)

Dr. Juliano de Lara Fernandes(Brazil)

The scientific componentof the conference was acomprehensive program thatincluded presentations on the

latest information on clinical management ofthalassemia, research, social and economic factors,epidemiology, iron overload, chelation therapy, bloodsafety and all aspects of the treatment of thalassemia. Inaddition to the scientific program, parallel satellitemeetings and symposiums were held to focus on otherareas of interest. These included: New Strategies for theTreatment of Thalassemia, Non-Transfusion DependentThalassemia (NTDT),Global Status of BloodSafety and Viral HepatitisControl, Pan-Middle EastThalassemia Meeting,and Sickle CellSymposium, in additionto industry-sponsoredsatellite meetings on thelatest medications andadvanced technologiesfor the treatment ofthalassemia.

The 15th TIFInternational Conferencefor Parents & Patientsfocused on the latestnews on the treatment of thalassemia and management ofrelated complications. Bone disease and painmanagement, nephrology-related complications, accessto new treatments for Hepatitis C, and access to safemedicines are all emerging (Continued on pg. 12)

The 15th TIF InternationalConference for Parents &Patients focused on thelatest news on thetreatment of thalassemiaand management ofrelated complications.

Winter 2013-14 11

12

(Continued from pg. 11) concerns. The Patients Program alsoincluded workshops and roundtable discussions on capacitybuilding. Presentations on patient self-management and healthcoaching, communication to patients and families, and positivethinking were well received and are areas of increased interestto many patients and parents. The conference also providedforums for TIF to establish exciting new partnerships, such asthat with Madame Antoinette Sassou-Nguesso, First Lady of

the Republic of the Congo, regarding TIF’s workwith sickle cell disease; and with Her ExcellencyDr. Aishath Shehenaz Adam, Ambassador of theRepublic of the Maldives to the United ArabEmirates, concerning the islands’ situation ofhaving the highest thalassemia carrier ratesin the region.

The dramatic scientific advances thathave occurred in the last three decadeshave helped to better understand thepathophysiology and natural historyof thalassemia and to improve theprevention and managementstrategies for the disease. Thesestrategies have literally convertedthis childhood fatal disease into achronic illness, with patients incountries in which national strategies

have been developed and adoptedenjoying a very good quality of life. In 2006,

the World Health Organization adopted specificresolutions for the control of thalassemia and sickle celldisease; however, many countries are still struggling to developeffective programs at a national level – the absence of whichresults in high morbidity rates.

Through the Thalassemia International Federation, theglobal community of patients with hemoglobin disorders isaiming to spread knowledge regarding the disorders andachieve the recognition of hemoglobin disorders by national,regional and international officials as a major public healthissue with considerable social and economic repercussions. Inaddition, the global patient community aspires to furtherresearch on matters such as gene therapy, as a possible finalcure for thalassemia and sickle cell disease.

TIF hosts and takes part in numerous initiatives and events.You are encouraged to visit the TIF website(www.thalassaemia.org.cy) to learn more about theorganization’s activities and to register as a member in order toreceive frequent updates.

Riyad ElbardTreasurerThalassemia International Federation

For more information on this event,contact Christina Marra at

cmarra@RomaFence.com or 416.735.1180.

The Roma Fence Group of Companies

18th Annual Golf Invitationalis coming soon!

ThalaVision is now accepting ads!Reach thousands of readers andpromote your business whilesupporting a great cause. Allproceeds from submitted ads go to

the Thalassemia Foundation ofCanada and its quest to fundthalassemia patient care andscientific research.

For ad rates, specs and deadlines,contact Stefanie Polsinelli atstefanie.polsinelli@Thalassemia.ca

The Roma Fence Group of Companies

18th Annual Golf Invitationalis coming soon!

Winter 2013-14 13

Earlier this year, thalassemia patientsfrom across the United States gathered atthe Cooley's Anemia Foundation's (CAF)Patients and Friends Conference inPhiladelphia to learn from doctors andscientists and to meet fellow patients.

As one of this year's panel speakers, Iwas able to share my thoughts on what it

was like to transition from someone who never talked abouthaving thalassemia to someone who now writes a bi-weekly blogabout it, called josephinebila.com.

A while back, I realized that there are many patients who feelstigmatized about having a blood disorder. For the greater portionof my life, I, too, was one of those people. In order to helpalleviate that stigma, I decided that my voice, coupled with myeducation in psychology, could be used to challenge and removefeelings of shame.

My goal is to help free people from negative thoughts and toteach people how to live authentic lives. My blog postsincorporate the methodologies and tools that I learned during myMaster of Social Work program at New York University, as wellas the personal observations I’ve made and experiences I've facedover the last 36 years of my life.

My newfound dedication to thalassemia patients and other

sufferers of chronic illnesses has given my life purpose. Throughthe Internet and social media, I have been able to help peoplefrom all over the world.

In September of 2012, a young lady named Jude Kamal wroteto me, saying that my blog inspired her to live an audacious life.She told me that she had always wanted to write a book about herexperiences with thalassemia; I encouraged her to do just that. Inearly October, my heart sang with joy when Jude tweeted this tome: "I am finally going to do what I have wanted to do for solong thanks to @JosephineBila, wait and see people :D#Writing." Today, her book, Thalassemia: My LifelongCompanion, has been published and is available for purchase!

One of my other blog fans told me that – until this year – healways threw away the newsletters that advertised the CAFPatients and Friends Conference. He said that I helped him seethings differently; he decided to attend the conference so wecould meet, and we became instant friends!

The moral of the story is this: you have a voice that matters.You matter. Speak your truth and don't hide who you are. Bebold. Be brave. Be you! You will be rewarded when you do.

Josephine Bila, M.S.W., is a storyteller, expert patientconsultant to the US Food and Drug Administration, and ananimal lover. Get her free e-guide on healthy living athttp://tinyurl.com/JoNewsletter.

Having a Voice That Matters By Josephine Bila

Jude Kamal was bornon April 8, 1992, inAmman, Jordan. Thesame year she wasdiagnosed withthalassemia, so was hersister, Sarah, leaving theirparents heartbroken.

However, Kamal did not let this affect herperspective on life; she realized early on that lifemay not always be fair, but, regardless ofwhatever challenges she may face, she must begrateful to be alive. She lives life with passionand is appreciative of all her blessings. Herdiagnosis made her determined to make adifference in peoples’ lives, and she wasinspired to write a book, entitled Thalassemia:My Lifelong Companion.

Having the blood disorder is a sensitive topic to both Kamaland her sister; it had gotten to the point where it was nearlyimpossible to talk about. The two girls did not want any of theirfriends to know about their illness; they did not want to be treateddifferently and they did not want to be seen as outcasts. AlthoughKamal hated her illness at times and blamed herself for the

struggles she faced, she made herself believe thatenduring pain would make her stronger.

Thalassemia is an inspirational and poignanttale of a unique sisterhood’s journey towardsacceptance, hope, survival and family. It is aheartfelt and touching journey that unravels theunbroken sisterly bond, inner strength and theconstant struggle that never seems to end.

With her book, Kamal aims to inspire readersand allow them to be grateful for what theyhave. She wants them to realize that life is shortand they should live it fully and happily. She isalso hoping that her publication will raiseawareness of thalassemia within the largerpopulation.

Kamal is currently an Environmental Designstudent at the Ontario College of Art & Design in Toronto, Ontario.

To request a complimentary paperback review copy ofThalassemia: My Lifelong Companion, or for more information,contact Xlibris at 1.888.795.4274 ext. 7879 orwww.Xlibris.com.

Article was repurposed from a press release put out by Xlibris

A Novel Idea About Thalassemia

14

(Continued from front cover) 10-kilometre route through thewest side of the park. This was a change from the past twoyears of the event, in which participants enjoyed the easternroute.

Passersby, out for a Sunday morning run or stroll, oftenstopped by the registration desk to inquire about the event andthe cause. The organizers and local student volunteerswelcomed everyone and passed out informational brochures andpins promoting the TFC. The walkathon not only acts as afundraiser for the TFC, but also helps raise awareness ofthalassemia and the TFC in the broader community.

All walkathon participants received a bright red t-shirt,donated by LiUNA – Local 506, along with a TFC mug.Attendees also enjoyed some refreshing drinks, fresh fruit andsnacks, all donated by Surve Construction. Once participantshad completed their walk they were also treated to freshpopcorn, made on-site at a popcorn stand courtesy of LiUNA –

Local 506. The youngsters involved in the walkathon werefortunate enough to have face-painting available, as well.

The Thalassemia Foundation of Canada is extremely gratefulto everyone who participated in the walk and who sponsoredother participants through donated funds. Participants in thewalk showed incredible determination to raise more funds thanin previous years by soliciting friends and relatives to supportthe cause. Big thanks also go out to the main sponsors, LiUNA– Local 506 and Surve Construction, who make it possible –through donation of goods and services – for all funds raisedfrom the walkathon to go towards the TFC. Thank you also toall the organizers and volunteers, who spend countless hourspreparing and cleaning up after the event. The event cannot takeplace without your generosity.

We hope you will be able to join us next year for the fourthannual Walk-for-Thalassemia! Stay tuned towww.Thalassemia.ca for full details on the upcoming event.

Twinkles the Clown with some of her newface-painting friends

Amedeo Salituro and Frank Romeo busy making popcorn for all theparticipants. (Popcorn machine donated by LiUNA – Local 506.)

Student volunteers Cassandra Malandrinoand Pedro Oliveira.

Enza Salituro, Event Co-Chair, welcomespeople to the walkathon

Rob’s DJ spins tunes for the participants Thalassemia Foundation of Canada Board member Bessie Calabria(centre) surrounded by family and supporters

15

The Roma Fence Group of Companies’ 17th annual GolfInvitational, in support of the Thalassemia Foundation ofCanada, took place on Wednesday, August 28, 2013, at RedCrestCardinal Golf Course in King, Ontario.

The 138 golfers who took part in the tournament were treatedto on-course delights, like a barbeque lunch and porchetta, thelatter of which was graciously donated by Gino Varone ofMontecassino Place Woodbridge. Each participant also tookhome a prize: a bottle of vintage red wine.

After the tournament, a seated dinner took place at

Montecassino Place Woodbridge. The nearly 200 people whoattended the dinner delighted in an antipasto bar, three-coursedinner and open bar, and had the opportunity to win great raffleprizes, including a 51-inch television.

The Thalassemia Foundation of Canada and The Roma FenceGroup of Companies would like to express their gratitude to allthose who put forth an effort to make the 17th annual GolfInvitational a success. This year’s event raised approximately$15,000! Your support is greatly appreciated, and we lookforward to seeing you at next year’s Golf Invitational! Staytuned to www.Thalassemia.ca for full event details.

ROMA FENCE G LF

A & R Geosynthetics

Acculink Fence & Wire

Advanced Entry Systems of Canada

Alliance Creative Marketing

Anscon Contracting Ltd.

ApoPharma Inc.

Bekaert Corporation

Ber-Cool Ltd.

Bidders Choice

Bill Radcliffe

Bolton Steel Tube

Cambridge Canvas

Canada Wire & Metal Inc.

City Environmental

Cobra Float Services

Colourific Coatings

Coutinho & Ferrostaal Ltd.

Daily Commercial News

Del Metals

Duracrete Concrete Fence Products

Falco Steel Fabricators

Fernview Construction

Future Temp Glass

Jean Drouin

Hub International

J. Castator & Son Fencing

Kon-Strutt Construction

Leone Fence

LiUNA – Local 506

Masters Insurance

Mircom/Gardia Inc.

Medallion Fence

Montecassino Place Woodbridge

Multitube Inc.

Ontario Mechanical Equipment Sales

Peninsula Construction

Platinum Printing Group

Powell Contracting

Pro-Star Excavating & Grading

Rocky River Construction Ltd.

Roma Fence Ltd.

Sam Falcitelli

Sevenview Chrysler

Sometrik Contracting Ltd.

The Falcitelli Family

The Fence People

Tom Gadbois

Uniwire Trading

York Disposal Services

W.I.G.S

I N V I T A T I O N A L

Thank You to Our 2013 Contributors and Hole Sponsors

Winter 2013-14

16

(Continued from front cover) and the announcements of therecipients of the Foundation’s numerous awards.

The first award presented was the Chris BennedsonPresident’s Award, given for continued dedication and servicein promoting the work of the Thalassemia Foundation ofCanada. The recipient of this award was Anita Aimola, thePresident of the Guelph Chapter of the Foundation.

The second award given out was the Gino Fortunato HopeAward. This was presented to Helen Ziavras, for showingtremendous strength, courage and determination in the fightagainst thalassemia.

The final award presentations were for the 2013 CorradoFalcitelli Memorial Scholarship Award and the 2013 SecondaryStudent Excellence Award. The Corrado Falcitelli MemorialScholarship Award is given to a Canadian citizen withthalassemia major or intermedia who is registered in a full-timepost-secondary education program, in order to provide anincentive to patients who are continuing their education. TheSecondary Student Excellence Award is given to a Canadiansecondary school student with thalassemia major, to recognizethalassemia patients who demonstrate determination,

commitment and enthusiasm, and to motivate and encouragethalassemia patients to continue to work through life’schallenges and contribute to their community.

The Thalassemia Foundation of Canada is grateful to all ofthe recipients for their hard work and dedication to its cause.

The evening also included a special presentation by severalmembers of the Mullani family, who were on hand to announcethe Naushy Mullani Travel Award, which they created inmemory of their relative, Naushy Mullani, a thalassemia patientwho passed away on October 20, 2008. The purpose of theaward is to provide assistance to thalassemia patientsconsidering travelling in order to educate themselves on currentdevelopments in thalassemia treatment and research around theworld. (The award will be administered through theThalassemia Foundation of Canada.) The Mullani family hasdonated $50,000 to the Foundation for this purpose. Hugethanks are extended to the Mullani family for theirthoughtfulness and unparalleled generosity.

Dr. Jeffrey H. Lipton, of the Department ofHematology/Medical Oncology at Princess Margaret Hospital,and a Professor of Medicine at the University of Toronto, wasthe esteemed Guest Speaker at the 2013 gala. Dr. Lipton movedthe crowd with his informative and heartfelt talk, and theFoundation thanks him for his involvement in its event.

Finally, thanks to the efforts of all donors, sponsors and othersupporters of the Valentine’s Dinner Dance, the ThalassemiaFoundation of Canada was able to donate $110,000 towardsthalassemia research in 2013. The cheque for this donation waspresented by the Board members at the dance.

After all the award presentations and speeches, guests wereready to get to their feet and let loose. Veriation DJ Servicesmade it easy for them, playing a funky mix of classic oldies andcurrent Top 40 hits.

The Thalassemia Foundation of Canada would like to thankeveryone involved in the event, especially the volunteers who

Motown group BluSoul performs for guests during the antipasto reception

Then-TFC President Riyad Elbard and TFC Board member Alfonso Sinaguliapresent Guelph Chapter President Anita Aimola with her award

TFC Board members Christina Marra, Helen Ziavras, Bessie Calabria andSilvia Livia

Winter 2013-14 17

gave so freely of their time, and thedonors and sponsors who continue toamaze with their endless generosity.Without your help and support, this event– and the success of the ThalassemiaFoundation of Canada – would not bepossible.

Next year, the ThalassemiaFoundation of Canada will be celebratingthe 25th anniversary of its Valentine’sDinner Dance. In order to properly

commemorate this milestone, theFoundation will be hosting the biggestand best gala yet! The event will be heldon Saturday, February 22, 2014, atRiviera Parque Dining, Banquet &Convention Centre in Vaughan, Ontario.The evening will feature uniqueentertainment, a gourmet meal, greatprizes, and lots of fun surprises! TheFoundation hopes to see you there, insupport of its great cause. Help theFoundation celebrate how far it’s come –and help it make strides in thalassemiaresearch and care in the future! For moreinformation on the dance, or to learn

how you can become involved or sponsorthe event, please contact Christina Marra at416.735.1180 or cmarra@RomaFence.com.

Thank you to our Contributorsand Table Sponsors!

Amedeo & Enza SalituroAngelo & Rita ViolaApoPharma Inc. (Apotex)Avante Property ServicesCindy DiNinoCiro & Angela PolsinelliEastern Power Ltd.Fazzari & PartnersJason & Kristina Franklin

John & Fame RisortoLiUNA – Local 183

LiUNA – Local 506

Masters Insurance

Mike & Silvia Livia

Nick & Helen Ziavras

Novartis

Order Sons of Italy Canada

Remo Ferri Groupof Automobiles

Roma Fence Ltd.

San Antonio Fish Market

ScotiaBank

Stefanie Polsinelli

The Falcitelli Family

Tony Marra

Tony Tsao

Universal Electric Motors

Woodbridge InternationalGolf (& Social)

Acadian Driveaway

A Glitter of Hope

ApoPharma Inc.

Aquarius Men’s Wear

Avante Property Services

Beneplan Inc. BenefitsManagement

BMW TorontoCindy DiNinoDino & Antonietta DiNinoEastern Power Ltd.Grace BancheriImmanuel FloristJohn & Fame RisortoMaranello FerrariMasters InsuranceOrder Sons of ItalyOrder Sons of Italy (All Lodges)

Order Sons of ItalyGrand Lodge

Pasquale’s Trattoria

Prestige Land Maintenance

Roma Fence Ltd.

Sam & Bessie Calabria

Sam & Dina Falcitelli

Sam Totera

San Antonio Fish Market

Sherry Radcliffe

Signature Bindery Services

Signaturephotobooks.com

Supreme Financial

Ti Amo Decorating

Tony & Gino Falcitelli

Villa Charities Inc.

ContributorsTable Sponsors

The TFC Board accepts a cheque for the NaushyMullani Travel Award from the Mullani family

Setting the scene for a magical evening

18

Winter 2013-14 19

Bowling for Thalassemia By Fame Risorto

It’s hard to believe that another year has gone by, but it has, and we were excited to onceagain host our Bowling for Thalassemia fundraiser! On June 14, NEBs Funworld in Oshawahelped us put on a fun-filled “Rock ‘n Bowl” bowling event that was enjoyed by our hugesupport group of family and friends.

As the bowling matches began, children ran around, giggling and eating pizza and popcornas their parents caught up with friends they hadn’t seen in a while – likely since our lastbowling fundraiser! Many people have told me that the event is a great opportunity to giveback and have fun at the same time, and nothing pleases me more than knowing that peopleare enjoying themselves while supporting a great cause.

Also at the event, Treasure Divas displayed a beautiful array of their costume jewelry. Allthe women who attended truly enjoyed the selection – and I’m sure all the husbands moanedabout their wives buying yet another bauble!

Over 200 people attended the fourth annual Bowling for Thalassemia, and I am ecstatic toreport that we were able to raise an astounding $15,200! This incredible feat would not havebeen possible, of course, without the generosity of our many sponsors:

Because of our sponsors’ generous donations, almost every participant left with anamazing door prize or raffle prize; one of these prizes was a trip to Las Vegas! In a happycoincidence, the winners of the trip happened to be celebrating their 10th weddinganniversary that evening. Congratulations again, Rob and Rose!

The fourth annual Bowling for Thalassemia would not have been possible without the dedicationand support of the fundraising committee: Lisa Braccia, Mary D’Addario, Lisa D’Annunzio, RoseDelGatto, Rose Giordano, Carm Ianiri, Angela Merlo and, of course, my mother, Annette Calderone.I love you all, and can’t thank you enough for your support throughout all of this.

I look forward to planning next year’s event with my committee – and to welcoming oldfriends and newcomers to our fifth annual event, sure to be another big success! Stay tuned towww.Thalassemia.ca for further details.

Alba Railings Inc.Angela And Tino MerloAuto Worker’s Community Credit Union

Beauty Beyond Skin DeepAnnette & Domenic CalderoneCadillac Fairview Corporation Ltd.Danny RisortoDiana PirainoDelta-Rae Homes

Desousa HomesFazio’s Restaurant And Wine Experience

Ground ConceptsGus Brown Pontiac Buick GMCJack Astor’s Bar & Grill (Whitby Location)

Lisa & Pino D’AnnunzioLowe’s CanadaMaison Blanc Day SpaNature’s Emporium

North End Bowl (NEBs)Real Canadian Superstore Regina RocchettaRONA Millwork Home CentreRose & Pat IammarinoSam & Rita RisortoSara ColalilloSharon & Bob SullivanTangles Hair SalonTreasure Divas

Pig Roast toSupportThalassemiaBy the Risorto Family

On August 10, our dear friendsRoger and Susan Simoes hostedthe third annual Pig Roast toSupport Thalassemia on theirbeautiful country property inBradford, Ontario.

What a day it was, filled withmany great friends and relativestravelling the distance to supportthis worthy cause! Roger ralliedhis many friends in Bradford todonate food, beverages, andsupplies. A special thank yougoes out to John and LindaHodgson, for their generousdonation of the pigs used for thebarbeque. Thanks to Roger’sincredible barbeque recipes, hewas barely able to keep up withthe demands for the pork andchicken. As popular chef RachelRay would say, it was all“deelish!” To the guests’ delight,Pat Risorto serenaded everyonewith renditions of his Italianhometown’s favourite songs,with close friend Marioproviding the vocals. Through allthis fun, we were able to raiseover $4,600 at this year’s event!

From the bottom of our hearts,thank you Roger and Susan – andthank you, Bradford!

Photo courtesy of Mary Lou Naccarato/NEBs Funw

orld

2014 Upcoming Events 25th Annual TFC Valentine’sDinner DanceSaturday, February 22, 2014Riviera Parque Contact cmarra@RomaFence.com for info

20th Annual TFC Guelph ChapterDinner DanceSaturday, March 8, 2014, Guelph PlaceBanquet Hall, Guelph, OntarioCall Anita at 519.821.5802 for tickets

4th Annual Walk-for-ThalassemiaSunday, May 4, 2014, Toronto, OntarioFull details at www.Thalassemia.ca

Roma Fence Group of Companies18th Annual Golf InvitationalSummer 2014Contact cmarra@RomaFence.com for info

MEMBERSHIP FORM

Name:

Address:

Phone:

Email:

Additional donations can be submitted along with your $10 membership payment. Thank you.

340 Falstaff Ave., Suite 204North York, ON M6L 2E8

Tel/Fax: 416.242.THAL (8425) Email: info@Thalassemia.ca • Website: www.Thalassemia.ca

Registered Charitable # 119068492 RR 0001

Winter2013-14

NEWSLETTER OF THE THALASSEMIA FOUNDATION OF CANADA