NAF Update

Mike Parent, Executive Director of the

National Ataxia Foundation

Disclaimer The information provided by speakers in any presentation

made as part of the 2012 NAF Annual Membership Meeting is for informational use only.

NAF encourages all attendees to consult with their primary care provider, neurologist, or other health care provider about any advice, exercise, therapies, medication, treatment, nutritional supplement, or regimen that may have been mentioned as part of any presentation.

Products or services mentioned during these presentations does not imply endorsement by NAF.

Welcome

• As we celebrate 55 years of service to the ataxia community, let’s look back at the very beginning of the National Ataxia Foundation through today.

1957• Thirteen attended the organizational meeting

of the incorporators and directors on April 8th, 1957

• First Officers:• President: Ellis J. Sherman• VP & Secretary: Henry Schut• Treasurer: Robert Van Hauer• Dr. John Schut was appointed as the first Medical Director

1958

• The first Annual Meeting was held on April 16, 1958 at Glenwood Hills Hospital, Minneapolis Minnesota.

• Nine out of the thirteen members were present.

• Three more were elected to the membership.

1958

• A report was made on the “Ataxia Incidence Study in Minnesota”. 4,148 inquiries were mailed to Minnesota doctors, 293 replied which located 91 cases, none of which were from the same family.

1960The third annual membership meeting was held February

11, 1960 Election: Brant Kreun and Julie Schuur elected to the Board of Director. This increased the number of board members from three to five.

Julie Schuur continues to serve faithfully on the Board of Directors and I thank her for her unwavering commitment in support of the ataxia community.

Fund balance ending December 31, 1960 was $2,691.19.

1970NAF was a pioneer in developing a multi-disciplinary approach for ataxia clinics and began offering free ataxia clinics. In 1970 the first clinic lead by Dr. Roger Rosenberg, Dr. Larry Schut, and Dr. William Nyhan went to Sioux Falls, SD on December 13, 1970. 95 people attended this clinic, 33 were examined.

1970WCCO TV out of Minneapolis was there to cover the clinic and made a film. The three doctors were invited to New York City for a press conference which was attended by Time, Life, and Associated Press. Time published an article on January 25, 1971 which resulted in letters from all over the country.

1971• January 5, 1971: Fund balance is $1,200. April 17,

1971: membership fees were established: Annual-$5.00 Sponsoring-$25.00 Lifetime-$100.00

Prior to this date, memberships needed to be approvedby the Board of Directors at the annual membership

meeting.

1971

• “The Lighthouse News” made its debut in August 1971. The four page newsletter went to all NAF members and available to others interested in ataxia.

1972

• February 19, 1972 Annual Membership Meeting held at Minneapolis Clinic with 38 members present. (This was the same day of Dr. John Schut’s funeral, NAF’s founder, who passed away from SCA1.)

1972

• A directory of neurologists for referrals is was started in 1972.

• Contributions in 1972 totaled $6,537.

1973

• February 10, 1973: Annual Membership Meeting was held in Minneapolis. 26 attended the meeting.

• By 1973 NAF was sponsoring two ataxia clinics each year, providing free neurological exams, genetic counseling, and insurance counseling.

1974

• NAF’s first brochure was published.

• Lighthouse News (now called “Generations”) became quarterly.

• Response to clinics has been good. Mini clinics are held on Thursdays.

1974

• Production of a slide show proposed at a cost of $1200.

• Letters sent to 3500 US neurologists. One out of 7

responded reporting 6,211 cases of ataxia.

1975• A new NAF logo (which remains today) and a newly designed

newsletter called “Generations” were introduced in 1975.

• The first joint meeting of the nation’s leading clinical, genetic, and basic research professionals concerned with research into the causes of the hereditary ataxias took place in Minneapolis, Minnesota in November 1975. Dr. Larry Shut chaired the one-day seminar which focused on the current progress of ataxia research in the US and the further development of world-wide interest into the ataxias.

1976

• Total contributions for 1976 were $41,350

1977

• The first international symposium on inherited ataxias, held November 1977 in Los Angeles, drew almost 100 researchers representing five countries. NAF was a major sponsor of this symposium.

1977

• February 12, 1977: NAF received 800-900 letters as a

result of Ann Landers publishing.

• Twenty-six patients from eleven states seen at the July 1977 free ataxia clinic.

1978

• Eighty nine people attended the Annual Membership Meeting on February 11, 1978 in Minneapolis, MN.

• Four (4) clinics were held in 1978.

• First ataxia research grant was awarded to Dr. Robert Currier in Mississippi for $5,000.

1978 cont.

• NAF received a $36,000 CETA grant and by July, 1978 6 CETA workers were employed. Two additional workers were approved in August.

• Stu Voight (MN Viking) made TV spots for NAF.

• National directory of neurologists interested in seeing ataxia patients was established.

1978 cont.

• “Ten Years To Live”, the book by Henry Schut, was published in 1978. The first printing of 10,000 quickly sold out. Countless readers learned about ataxia through this compelling book from the author who was one of the original incorporators of NAF.

1979

• Two research grants awarded: • Dr. Currier ($3,250)• Dr. Kark ($2,500)

1982

• NAF’s 25th Annual Membership Meeting held on February 20, 1982 in Jackson, Mississippi, 75 people attended. This was the first annual membership meeting held outside of Minnesota. Since 1982 the annual membership meeting has returned to Minnesota only twice.

1982 cont.

• NAF and members wrote to Dear Abby asking her to print a letter about ataxia in her column. From those efforts, a letter in “Dear Abby” appeared, resulted in over 3,400 letters to NAF.

• Regional Ataxia Clinics began in New Orleans, headed by Dr. Michael Wilensky and the Louisiana Chapter

1983

• The Del E. Webb Foundation awarded a $15,000 grant for ataxia research to NAF, the largest foundation grant ever received by NAF.

• Occupancy date for HUD housing was May 1, 1983. Units named Henry Court I & II in memory of Henry Schut.

1985

• The Del E. Webb Foundation awarded a $50,000 grant for ataxia research to NAF, the largest foundation grant ever received by NAF.

• NAF purchased its first computer, a Leading Edge

with 20 megabyte hard drive. (Today’s average laptop has 160 gigabytes - 1,000 megabytes equals I gigabyte)

1986

• Annual Membership Meetings have now been expanded to Sunday morning.

1987

• NAF began charitable gambling as a fund raiser to help support research and programs. For more than 20 years this revenue stream brought in millions of dollars to help support NAF’s important work.

1990

• March 2 – 4, 1990 Annual Membership Meeting held in Metairie, Louisiana. 247 attended.

1991

• NAF approved for Combined Federal Campaign (CFC). Over the past 20 years NAF has seen more than $500,000 in contributions from government workers contributing through their local CFC.

1992

• NAF Prodigy support group begins (NAF’s first social media), following in 1993 the NAF Ataxia Bulletin Board or E-NAF, the first electronic NAF support group.

1993

• First ataxia gene found, SCA1, by Dr. Orr (University of Minnesota) and Dr. Zoghbi (Baylor).

• The Annual Membership Meeting was held in

Houston, Texas and for the first time the number of conference attendees reached 300.

1994

• ABC’s 20/20 news program filmed in part at the NAF office on January 26, 1994 and was aired in May 1994 about ataxia and NAF.

1995

• March 10 – 12, 1995 Annual Membership Meeting held in Huntsville, Alabama with 415 attending, the first annual membership meeting to reach more than 400 attendees.

• First stock donation received in 1995. • NAF now has a presence on the web launching its first

website.

1996

• The Friedreich’s ataxia gene was found in 1996 by researchers at Baylor College of Medicine, led by Dr. Pandolfo.

1997

• Due to the generosity of the Foundation’s members and special events, revenues reached an all time high in 1997 totaling more than $720,000.00. Through this support the National Ataxia Foundation was able to fund six (6) vital ataxia research studies and provide important programs throughout the United States and internationally.

1997 cont.

• The Annual Membership Meeting was held on February 14-16, 1997 in Jackson, MS at the Harvey Hotel. 357 attended the National Ataxia Foundation’s 40th anniversary

1998

• NAF received its highest level of funding in the history of the organization reaching more than $1,200,000.00. The largest gift in 1998 came from an estate.

2000

• First International Ataxia Awareness Day (IAAD) occurred on September 25, 2000. This was the first time that ataxia organizations throughout the world declared and recognized September 25th as IAAD. NAF members throughout the United States responded to the call to inform their local communities about ataxia.

2000 cont.

• Total revenues reached more than $1,000,000.00 marking the second time the Foundation received more than a million dollars in support in a given year.

• In 2000 the Foundation funded ten (10) ataxia research studies, including its first NAF Fellowship Award. Total dollar awards increased by 35% compared to 1999 research funding.

2001

• In 2001, during NAF’s strategic planning sessions, a new mission statement was created as follows:

“The National Ataxia Foundation is dedicated to improving the lives of those affected by ataxia through support, education, and research.”

2001 cont.

• In December 2001 NAF funded fifteen ataxia research studies, including its first NAF Young Investigator Award. This was the highest number of research studies funded by NAF in one year and the highest dollar amount committed in a given year, a 62.5% increase in funding over the year 2000.

2002

• NAF receives $20,000.00 from the game show “Weakest Link.” The male super models, the Carlson twins, Lane and Kyle, were featured on an episode called “Male Model Edition” and selected NAF as their charity.

2004

• Revenues received in 2004 reached more than $1,100,000.00

2005

• Although NAF had sponsored and/or co-hosted a number of scientific ataxia meetings beginning

in the mid-1970s, the first NAF Ataxia Investigators Meeting (AIM) was held in Tampa, Florida with more than 40 top ataxia scientists and clinicians from around the world.

2006

• On December 18, 2006 received its first $1 million dollar donation. This historic and most generous donation was made by the Clementz family creating The Michael and Patricia Clementz Family Endowment Fund For SCA 3 Research.

• NAF received its first on-line donation through its web site.

2006

• NAF membership support increase by 55% in 2006.

• NAF awarded sixteen research awards in 2006 with a funding commitment of nearly $500,000.00.

2007

• In December 2007 NAF made a research funding commitment of more than $850,000.00 and reviewed a total of 42 research applications. The largest number of application considered in the history of NAF.

• In 2007 NAF awarded funding to seventeen promising ataxia research studies, including studies conducted in the United States, Italy, Portugal, Switzerland, Belgium, Austria, Australia and the United Kingdom.

2007 cont.

• In 2007 added its fourth research program called the Friedreich’s Ataxia Special Projects Award. In late December 2007, NAF awarded its first $200,000.00 study through this new NAF research program.

• In 2007 NAF had 7,690,039 “hits” on its web site with

691,088 visitors.

2007 cont.

• The first NAF Walk N’ Roll for Ataxia was held in San Diego California host by the San Diego Ataxia Support Group with lead organizer Earl McLaughlin.

2008

• In 2008 NAF made funding commitments for 12 promising ataxia research studies including a $200,000 NAF Friedreich’s Ataxia Special Projects Award and two $100,000 NAF Young Investigator Awards. The studies were conducted in the United States, Germany, Italy, Canada, Netherlands, Spain and United Kingdom.

2008

• In December 2008 NAF reviewed the largest number

of quality ataxia research applications submitted for consideration in its history, a total of 49.

2008 cont.

• In 2008 NAF began E-Blasts to its members to help better inform NAF members and others about breaking news in ataxia research, legislative initiatives, clinical studies, activities of NAF, and other topics of interest within the ataxia community.

• Second AIM held in Las Vegas with more than 100 participants.

2009

• In 2009 NAF granted funding awards to 14 promising ataxia research studies. In addition, with multi-year commitments made in 2008, second year funding in 2009 for a $200,000 Friedreich’s Ataxia Special Projects Award and second year funding for two $100,000 NAF Young Investigator Awards.

• NAF funds its first clinical study.

2009 cont.• From 1998 – 2009 (over 11 years) NAF awarded

funding to 142 promising ataxia research studies in 11 countries.

• In 2009 NAF had 11,120,485 “hits” on its web site and 885,039 visitors from 120 countries.

• In 2009, NAF expanded its E-Blast capabilities and sent out 34 E-Blasts.

2010• In 2010 NAF’s total cash allocation for ataxia research

was nearly $600,000. • Over the past 15 years, NAF had funded nearly

$6,500,000 in research, and just in the past 7 years nearly $5,000,000.

• Over the past 12 years NAF had awarded funding to 152

promising ataxia research studies in 11 countries.

2010 cont.

• 3rd AIM held in Chicago with more than 120 participants.

• In 2010, NAF continued to upgrade its E-Blast capabilities and sent out 66 E-Blasts throughout the year, compared to 34 in 2009.

• The long standing President of NAF, DeNiece Roach,

passes away after a brief battle with cancer.

2011

• NAF was awarded a 3 year $1.5 million contribution from an anonymous donor to support SCA research, creating two new NAF research programs: the $100,000 Pioneer SCA Translational Research Award and the $50,000 Young Investigator SCA Award.

2011

• Nineteen research awards were awarded in late December 2011 totaling $875,000 (including a $50,000 partnership grant from BAARC), compared to ten studies funded in December 2010. 2011 proved to be the highest number of research studies funded in the history of NAF.

• NAF received 90 research proposals in 2011 (compared with 39 in 2010), the highest number of applications received in the history of NAF.

2011 cont.

• Walk N’ Rolls for Ataxia, now held throughout the country, has raised nearly $450,000 since 2007 to help support research and programs.

2011 cont.

• The Gordon and Marilyn Macklin Foundation makes a $100,000 research challenge to the NAF membership who responded generously, exceeding the matching gift challenge in record time and more than doubling research donations during the same time period the prior year.

2011 cont.

• NAF continued to reach out to help bring ataxia in the forefront through sponsorship of CMEs on ataxia, sponsoring a symposium on “Childhood Ataxia” at the Child Neurology Society Annual Meeting, staffing information booths at Ability Expos and medical conferences.

The Future

• NAF will continue to be a world leader in providing current and accurate information about ataxia.

• NAF will continue to bring researchers together

through scientific conferences such as the AIM.

• NAF will continue to bring Young Investigators into the field ofataxia research.

The Future

• NAF will continue to support IAAD and other initiatives to create greater awareness of the ataxias.

• NAF will continue to fund the best science in the world to help end ataxia.

The Future

• NAF will continue to establish support groups to provide local support and networking.

• NAF will continue to bring ataxia families together

though annual membership meetings and other initiatives.