Transcript NAF Update

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:
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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.
1960
The 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.
1970
NAF 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.
1970
WCCO 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 approved
by 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.