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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.
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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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