Welcome to NTSAD,
This is an exciting year as we commemorate NTSAD’s 65th anniversary.
I was thankful to have NTSAD in 2007 when my second child, William, was diagnosed with GM1 gangliosidosis. My husband and I felt alone and overwhelmed with emotions and with all the medical decisions we had to make. We found our way to NTSAD with the hope of finding the resources we needed to care for our son.
Four months after diagnosis, we attended our first Annual Family Conference. At the Conference, we were immediately welcomed with open arms by a network of affected adults, parents, grandparents and extended family who offered the type of compassion, understanding, and support that only someone who had experienced the same overwhelming diagnosis can give. At the Conference we were told, “The NTSAD family is not a family that you would choose to be part of, but it’s there when you need them most.” This is so very true, and the families continue to be the heart and soul of NTSAD.
The impact of the support I found at NTSAD led me to joining NTSAD’s Board of Directors in 2016. I am so proud to honor William and remain a part of this Community, serve on the Board of Directors, and participate in the advocacy and the advancement of research.
Sixty-five years ago, there was little knowledge about Tay-Sachs, Canavan, GM1, and Sandhoff diseases, let alone potential treatments. I am pleased to share that there are now clinical trials for each of these diseases. Although the NTSAD Community is in this new era of clinical trials, there’s still so much more work to do. NTSAD remains committed to finding effective treatments and a cure for families.
I encourage you to explore our website, sign-up for our newsletter, and follow us on social media for resources and the latest updates. I invite you to attend our Annual Family Conference and Imagine & Believe events. I hope you will join us as we commemorate 65 years of supporting families, providing education, raising awareness, and driving research.
NTSAD’s mission is to lead the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
Together, our mission is possible.
Oralea Marquardt, LCSW