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Welcome to
Our New Officers and Board Members!
A
new fiscal year begins and new leadership is
prepared to take NTSAD into another year of
success! We're excited to introduce our new
Officers and Directors to you in today's email.
You can see the full NTSAD Board of Directors on
our website here. We thank all of them for
their dedication to our families and our
mission.
It
is also exciting to report that NTSAD raised
over $1 million for the first
time this last fiscal year! Our thanks to all of you
who made gifts including those made to the Annual
Fund, Research Initiatives, Day of Hope, the
Annual Family Conference, and the Family Funds of
NTSAD!
We
look forward to another stellar year fostering and
funding research, supporting families, advocating
on behalf of them and the broader rare disease
community, and guiding couples and families as
they seek accurate genetic
testing. |
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Brian with his son
Dylan. |
I was introduced to NTSAD in
2003 just a few days after our first born son Dylan was
diagnosed with Infantile Tay-Sachs Disease. We attended
our first [NTSAD Annual Family] conference with Dylan in
White Plains NY, just two short weeks later. I have been
a part of NTSAD in a variety of ways ever since. I have
had the opportunity to attend every family conference
since 2003 and have been introduced to some of the most
wonderful, unique people in the world. My passion lies
around family support and I am available any time of day
to assist in that cause.
My wife Sherri and I
live in Pennsylvania with our two healthy sons Brady and
Devin. Dylan passed away in 2006. He was four years old.
I work full-time as a Human Resources Partner at QVC. My
role relates to managing people through an ever changing
environment which I can directly relate back to my role
within NTSAD. I am fully committed to finding treatments
that lead to a cure and representing each one of you
while honoring our son Dylan and his legacy. In
addition, I am motivated to help put the right
strategies in place so that we can support every family
through this process, no matter what stage you are in.
In the end, my ultimate goal is to help find a cure so
that no other family faces the grief of diagnosis day
and beyond!
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Blyth
Lord, Vice President |
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| Blyth
with her daughter
Cameron. |
As the mother of Cameron and
aunt of Hayden, both of whom had infantile Tay-Sachs, I
am honored to serve on the NTSAD Board, now as
Vice-President. In the years following Cameron and
Hayden's lives and deaths, I have watched NTSAD grow
increasingly sophisticated and thoughtful about how it
funds research, supports families and advocates for rare
diseases. What has been especially exciting to see is
how the two spheres of medical research and family
support are moving closer and closer together, as
researchers recognize how much they need to understand
the realities of the children and families whose
diseases they are working on. I am so proud of NTSAD and
how much it accomplishes with its small staff and mighty
corps of family and friend volunteers. This is a very
special organization.
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I
grew up and currently
live in New York City with my partner, Deirdre Lord, and
our son. I have worked in non-profits and in finance on
Wall Street and for private equity firms. I have a
background in
finance and public policy.
I first came into contact
with NTSAD at
the 2009 annual gala, to which I was invited
by Deirdre,
and her brother and sister-in-law, Tim and Alison Lord.
My appreciation for NTSAD and its
work with
families has only grown from there.
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| Ruth
with her little brother,
Aaron. |
As an older sister to Aaron, who
was born with Tay-Sachs in 1965, all I wanted to know
was when he was going to walk and play with me. Over the
years our interaction was minimal at the hospital where
he "lived" in Brooklyn, as was then the practice. I
watched my parents work tirelessly as NTSAD volunteers
throughout the years at fundraising events and various
outreach efforts in the
Tri-state
area during Aaron's life, after my dad's passing and way
beyond Aaron's passing just shy of age
6.
As
a family we never forgot Aaron, and never stopped
working toward research and a cure. Later in my life, I
was able to make a personal connection in Boston with
the NTSAD national office. I am pleased that I can
contribute in valuable ways using my skills in strategic
planning, focused and thoughtful program development,
governance, and as a support to the fantastically
dedicated staff.I have also been able to use my joy of
crafting to create different items for benefit auctions
from the Jacob's Sheep wool (note the link to Jacob's Sheep project)
and love the whole notion of being a part of the full
cycle from sheep to product to fundraising, to research
for prevention and a cure.
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I am a down-to-earth guy who is
an attorney and MBA but tries not to be limited because
I also happen to have been diagnosed with Late-Onset Tay
Sachs in the year 2000. I currently use a motorized
wheelchair during the waking hours. I am
very interested in advocating on behalf of NTSAD with
national politicians and I have the skills to assist
NTSAD in reaching and then surpassing its financial
goals. I would also like to use my professional network
to help NTSAD become nationally supported by the public
and hence, by politicians. I also maintain a
full-time professional position as a Contract Attorney
and enjoy writing, hanging out with friends, talking on
the telephone and watching TV and movies in my spare
time.
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Sophia Pesotchinsky,
Director |
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My daughter, Vera, has Late
Onset Tay Sachs (LOTS), which connects me to the
Tay-Sachs community.
I emigrated from Russia
with my husband Leon and daughter Vera in 1976. I have a
master's degree in chemical engineering but was lucky to
build my career in the medical device field which I
absolutely love. Over the years, I participated in
raising funds, wrote business plans, and was a board
member of three different companies.
I left the venture and
corporate world when Vera was diagnosed with LOTS in
2000, as I needed time to devote to Vera and to
Tay-Sachs research. At that time, with my expertise in
business and regulatory strategies, FDA communications
and clinical studies, I started a small medical device
distribution business that I run now out of my
home. My work
experience allows me to better understand research
related to Tay-Sachs and to appreciate the challenges
that our research teams experience dealing with this
difficult disease.
I have been involved with
the [Tay-Sachs] Gene Therapy Consortium since the
beginning (2007), as well as other projects related to
treatment. Being
involved in Tay-Sachs research and communicating with an
incredible community of parents gives me energy and hope
for the future. I look forward to being part of the
NTSAD board and continuing my work toward finding a cure
along with other NTSAD Board members and others devoted
to that goal.
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Our Thanks to Judith
Tsipis |
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We want to thank Judith
Tsipis, PhD for her dedication and commitment to NTSAD
over the years. After many years on NTSAD's Scientific
Advisory Committee, she is stepping down.
Her work has been a tribute to
her son, Andreas, who had Canavan disease until 1998
when he died at 23 years old. Her leadership in the
field of genetic counseling has resulted in an
established and respected genetic counseling program at
Brandeis University. Her knowledge surrounding genetic
testing contributed to the American College of Medical
Genetics issuing a position statement on screening for
Canavan disease. Most of all her commitment to raising
awareness around Canavan disease is well respected by
all of us.
Thank you, Judith, from the
bottom of all our hearts. We wish you the very best, and
know that you will always be a member of our special
family. |
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Your
Donation Today is Hope for Tomorrow!
Our many
efforts to fund research, care for families and their
loved ones are made possible thanks to generous
supporters worldwide. Gifts can be made through our
website here. Thank you for supporting NTSAD
and giving hope to all our
families! |
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__________________________________________________________________________
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National Tay-Sachs
&
Allied Diseases
Association
2001 Beacon Street, #204
Boston, MA 02135
(617) 277-4463
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