Leading the Fight to treatand cure Tay-Sachs, Canavan and related diseases
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The NTSAD Annual Family Conference is the cornerstone of our exceptional Family Support Services. It provides over 200 parents, grandparents,affected children, healthy siblings, affected adults and their families the unique opportunity to: gather with people that truly understand; learn about latest research and symptom management approaches; and discuss other important topics. The primary goals of the conference are to empower, support and connect families coping with Tay-Sachs, Canavan, GM-1 or Sandhoff. These diseases are always fatal in children and extremely debilitating in adults. The Annual Family Conference directly achieves our mission to support affected families and individuals in leading fuller lives.
Another important goal of the conference is to ensure every family is able to attend the conference especially those who cannot afford it. This is achieved through the Helping Hand Grant Program. Each year approximately $40K is raised through donations and grants. Every dollar raised is awarded directly to families in-need to help cover the expense of attending. Scholarships range in size from covering one night at the hotel to covering hotel, registration and travel expenses for the entire family. Each grant application is considered on an individual basis and priority is given to newly diagnosed families, families that have not attended before, and families that have lost their loved one in the past year.
Other examples of the powerful impact of the conference include parents donating equipment their child no longer needs to other families, the strong bonds and friendships formed over just a few days, and incredible sense of hope and empowerment that comes from attending the conference.
One attendee shared this beautiful sentiment after attending her first conference:
You don’t know true grace until you meet a mother holding her dying child in her arms reaching out to you, a total stranger, with love and compassion. I will never be the same.
National Tay-Sachs & Allied Diseases Association2001 Beacon StreetSuite 204Boston, MA 02135
email@example.com(617) 277-4463 phone(617) 277-0134 fax
Director of Family Services
My name is Kim Kubilus and I am available to help you in any way I can. I lost two brothers to a lysosomal disease related to Tay-Sachs. If I can help ease the heartache of another, then maybe my family’s loss was not in vain.
Please feel free to contact me anytime with any question or just to talk. I may not know the answer but I’ll do my best to find it. My email is Kim@ntsad.org or 800.906.8723.
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