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Newsletter | Special Edition World Down Syndrome Day 2017

At many homes throughout Long Island fast paced activity has

been the norm as we organize the rapidly approaching celebration

of World Down Syndrome Day. Alexander’s Angels is an all-

volunteer organization and we all work from home.

Similar in scope to the event that took place in 2015 but with a

new twist, the many individuals determined to make it an

enormous success are making sure it will be a very enjoyable and

unforgettable experience. Only one thing is missing: You!

Contributions by our Youth/Self-Advocate Group members,

opportunity to purchase the event T-shirt, drop-off sites to

receive contributions to the raffle, links to a promising research

study and ABA news is found on page 2. Pages 3 to 5 are filled

with details on the upcoming event.

We will be updating the website periodically with any new

developments.

We look forward to spending the weekend of March 18/19 with

you at Long Island’s North Fork!

Alexander’s Angels Board of Directors

Raising funds for Down syndrome research on

World Down Syndrome Day

With the global impact of research, since 2010, it is appropriate that funds raised by Alexander’s Angels during World Down Syndrome Day celebrations be donated to Down syndrome research.

2017 Fundraising Goal $25,000.00

Help our quest to raise funds (see pages 4 and 5) These are the two organizations chosen to be our beneficiaries and what they do:

Lu-Mind Research Down Syndrome Foundation- http://www.lumindrds.org. With a mission to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech for individuals with Down syndrome so they participate more successfully in school and employment, lead more active and independent lives, and avoid the early cognitive decline with aging and Alzheimer’s Disease. LuMind RDS Foundation has awarded more than $15 million in research grants since their founding in 2004. Alexander’s Angels has supported their research efforts since $2007 by donating $200,000. Let’s continue to be part of the exciting journey to improve the level of cognition of individuals with Down syndrome!

Dr. Xiao-Fei Kong’s research at the

Rockefeller University. Dr.Kong’s research at the Rockefeller University demonstrated that the three copies of interferon receptor genes affect the interferon systems through the increased expression of receptors as well as the enhanced interferon responses of immune cells. The overacting interferon system is well known to be related to autoimmune diseases, including lupus, thyroid disorders, type I diabetes mellitus, diseases common in Down syndrome. Dr. Kong’s study also found that about 10% of individuals with Down syndrome have skin candidiasis, a type of fungal infection. He searched for the evidence to support the hypothesis that the susceptibility of individuals with Down syndrome to fungal infection is due to an impaired T cells immunity from overacting interferon system. He found some clues of aberrant T cells in individuals with Down syndrome with more steps to clench the study.

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In this issue: Introduction, p. 1

World Down Syndrome Day fundraiser, p. 1

Belated News of our past Buddy Walk®, p. 2

A Visit to Roslyn H.S., p. 2

Reflections from a 9 year old, p. 2

Event T-Shirt Purchase | Raffle items drop off, p. 2

Two Important links, p. 2

Long Island celebrates! Details, pp. 3 to 5

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SAVE THE DATE: Alexander’s Angels 11th L.I. Buddy Walk, Saturday, October 14 at Tanner Park!

By Cassidy Bonadonna, age 9

It was another successful Buddy Walk® this past year. During the

event, Alexander’s Angels Youth/Self Advocate Group was officially introduced. How exciting! It was the tenth anniversary of the event. During the Buddy Walk, the youth group had our own information table, explaining what we’re about. We have been working on some events that are planned for the spring. We look forward to seeing you at our future events!

Roslyn High School Hosts The Up of Down: An Insight Into The World Of Down Syndrome

Ms. Kinshasa Allen, Social Studies teacher and adviser to the club SUSS -- Student's United for Safer Schools – and their members pose for a picture with our panel The Up of Down: An Insight Into the World of Down Syndrome. The panel sitting from left to right: Educator Mark Mihopulos, Self-Advocates Brittany Schiavone and Katherine Giunta, Moderator Esther Gomez-Nieto, and Self-Advocate Kyle Erickson with Ms Allen. Attending the program were also Child Psychology, AP Psychology students, and members of the school faculty. We thank Ms. Kinshasa Allen and the school for their hospitality. More information in our website.

Sharing A Great Experience! By Katherine Giunta, Self-Advocate

My name is Katherine Giunta and I spoke on January 13, 2017 at Roslyn High School in Roslyn, New York. This was my first time speaking for Alexander’s Angels.

I was excited to be asked to speak on behalf of Alexander’s Angels and share with everyone my experiences that I have had while being part of this program.

This program highlights the abilities of people with Down syndrome. I am no different than my peers. I work, have friends, have a boyfriend and enjoy my busy social life. Speaking to the students at Roslyn High School was such a great experience. I was very excited to speak and share my life’s journey with everyone. It is important to learn what living with Down syndrome is like. (cont. on page 5.)

Proud mom Lorie Bonadonna (T-Bones) shares the above winning essay submitted to a school based PTA contest by her daughter Cassidy, sister of Tommy Bonadonna. Wise beyond her years!

World Down Syndrome Day t-shirt Order yours online today. Wear to visit the aquarium and throughout the year to raise awareness of the special gifts of individuals with Down syndrome and of our love for them. Click here and scroll down to section in the website to purchase t-shirt. Deadline to order, March 1, 2017.

Two Important Links

Research study on the nature of speech difficulties in individuals with Down Syndrome. Need adolescents and young adults with Down Syndrome, between the ages of 14 and 30, who have English as their primary language. Click here to for link to flyer. ________________ "Did you know that under the NYS licensure law,

Applied Behavior Analysis (ABA) is only available for

individuals diagnosed with autism spectrum

disorder? Click here for more information.

Our Involvement at the Buddy Walk®

By Lily Mancini, Y/S-A Group Secretary

and Y/S-A Group Newsletter Co-Chair

TO DONATE ITEMS FOR 3/18 RAFFLE Drop off any donated items to be raffled by March 10, 2017. To arrange mutually convenient hours please contact the following: Nassau County, Jenn at jwinsbrown@aol.com | Suffolk County, Dawn at DawnMBLI@aol.com or Ronnie at ronnie.schneiderman@gmail.com

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SATURDAY, MARCH 18, 2017

Terra Cotta Art Gallery

Route 17150 Middle Road (Route 48) Cutchogue, NY 11935

1:00 p.m. Vineyard Tour by Allegra Borghese

2:00 p.m. to 5:00 p.m. Opening Reception

7th Exhibition

Amazing works of artists with Down syndrome Saturday, March 18 to Saturday, April 22, 2017

Artists: Artists from around the country and award are participating. The list will be published on our website as soon as it is available.

Curator: Max Yawney

Advisors: Josef Asteinza and Patricia Lannes

Committee: Angela Gomez-Nieto, Maria Barcia, Jacqueline Naughton and Sally Weintraub

North Fork Liaison: Karly Taplin-Lucarelli

Children attending the opening reception may create their own masterpiece at a heated tent under the supervision of Eva Garcia.

All above activities are free of charge but space is limited

and registration is required.

To register for all activities at this site and all the others during this weekend’s celebration click here . Once in the World Down Syndrome Day page on our website, there will be a button for

registration on each section.

Artwork Credit: The Face of the Sun, Allan Téllez | Untitled, David Danis

MARCH 18 (cont.)

Vineyard and Winery

150 Bergen Avenue

Mat t ituck, NY 11952

6:00 p.m. to 10:00 p.m.

Dinner/dance to celebrate

World Down Syndrome Day

and Alexander’s Angels 10th

Anniversary

Price: $ 55.00 p/p; Children 3 to 12

and Individuals with DS $ 30.00 See page 4 for free dinner

opportunity

SUNDAY MARCH 19, 2017

We encourage you to wear the World Down Syndrome Day t-shirt and blue nail polish

10:15 a.m. to 3:00 p.m. Arrival at 10:05 a.m. required for

special group price.

431 East Main Street , Riverhead, NY 11901

Price: Admission and Lunch General admission $ 25.00

Children 3 to 13; seniors 62+ $ 23.00 Individuals with

Down syndrome $ 15.00 Children 2 and under – Free or

$5 with lunch

DJ

Sponsored by

Long Island Celebrates!

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Hotel Accommodations

The Holiday Inn Express East End

1707 Old Country Rd, Riverhead NY 11901

Double Room $129; Suite $139 (2 adults, up to 4 children under 18, extra adult $10) suite includes 2 queen beds, 1 sofa pull out couch, small dining area, microwave, and a small refrigerator - Breakfast included, served 6 to 11 a.m.

Group Name: Alexander’s Angels, Inc. Call to reserve: 631-548-1000

Limited number of rooms at this rate—Call today!

PLACE YOUR AD ON OUR JOURNAL

All ads will be in color

Ad Specifications: PDF or JPG format

E-mail to: downrightart321@gmail.com include “DOWNrightART Journal 2017” as a subject

.

Rates

Category Rate Special Rate* Ad Size

Back Cover $700.00

5” x 8”

Inside Front Cover $600.00 5” x 8”

Inside Back Cover $600.00 5” x 8”

Full Page $300.00 $150.00 5” x 8”

Half Page $175.00 $100.00 5” x 3.875”

Quarter Page $100.00 $60.00 2.45” x 3.95”

Eighth Page $ 75.00 $50.00 2.45” x 1.95”

Patron $ 25.00 Listed alphabetically

one line 30 (10 pt.) characters max

*Acknowledge or celebrate a person or event in your family's life

Payment: Checks payable to Alexander’s Angels, Inc., “Journal Ad” in the Memo

Send to: Alexander’s Angels, Inc., 425 N Broadway #486, Jericho, NY 11753

Deadline: Friday, March 3, 2017

For further information call 516-361-7263

Thank you!

Additional Sponsorship Opportunities on Page 5

FREE DINNER OPORTUNITY THROUGH JOURNAL ADS:

Sell $350 in journal ads and get an adult dinner

Or $125 for a child or individual with Down syndrome dinner

Funds raised by Alexander’s Angels during this 2-day event will support research on Down syndrome. More details on page 1, right column.

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SPECIFIC SPONSORSHIP

DOWNrightART Sponsor - $3000.00 – Partially covers gallery rental and shipment of artwork to and from the

artists. Individual sponsor or joint venture by several collaborating businesses

Sponsorship recognition signage displayed in the gallery for the entire month of the exhibition, March 18 to April 22.

Details to be discussed with sponsor.

Six complimentary dinners at our March 18 evening celebration.

Full page ad in the event journal and recognition as DOWNrightART sponsor in the acknowledgements page.

Printing Sponsor - $1000.00 - Partially covers printed material for event.

Signage recognizing the sponsorship displayed in the gallery during exhibition’s opening reception, March 18.

Two complimentary dinners at our March 18 evening celebration.

Half page ad in the event journal and recognition as Printing sponsor in the acknowledgements page

Arts & Crafts Tent Sponsor - $800 - Partially covers tent rental and arts and craft materials.

Signage recognizing the sponsorship displayed in the gallery and the tent on March 18

Two complimentary dinners at our March 18 evening celebration.

Half page ad in the event journal and recognition as Arts & Crafts Tent sponsor in the acknowledgements page

Dinner Sponsor - $800.00 - Partially covers room rental, service, and complimentary wine.

Signage recognizing the sponsorship displayed during dinner on March 18

Two complimentary dinners at our March 18 evening celebration.

Half page ad in journal and recognition as Dinner sponsor in the acknowledgements page

Opening Reception - $500.00 - Partially covers cost of reception.

Signage recognizing the sponsorship displayed in the gallery on March 18

One complimentary dinner at our March 18 evening celebration.

One Quarter page ad in the event journal and recognition as Opening Reception sponsor in the acknowledgements

page

Sharing a Great Experience! (cont. from page 2)

It gave me a chance to show them that I am not afraid of what people may think because I may look different. We need to

focus on the individual not the disability. I have a lot of abilities. Lots of people with Down Syndrome want to be

independent, be on their own someday, and be part of a community. If someone wants to go to college, having Down

syndrome should not stop them. As I said, as an adult with Down syndrome I am my own independent individual person.

Alexander’s Angels is an organization that wants everyone with Down syndrome to be treated by their individuality not

their disability. It is important that we continue to reach out and speak to communities so they have a better

understanding that we have feelings and abilities just like they do.

We look forward to greeting all or you at the March 18/19 weekend to celebrate World Down Syndrome Day

and Alexander’s Angels 10th Anniversay. And, we will only be scratching the surface of what individuals with

Down syndrome CAN do. As we celebrate our milestone, as Y/S-A Group Newsletter Co-Chair Nicole Gomez-

Nieto put so well: We all remember the beginning of Alexander's Angels... With the help of everyone my wish

is it will be around 100 more.

Thank you everyone for your help in bringing us this far!