“Turn” the Page on Tay-Sachs
Rachel raises awareness for Late Onset Tay-Sachs disease and funds for research and family services.
Meet Rachel
My name is Rachel Turner, and I am living with Late Onset Tay-Sachs, an ultra-rare, progressive neurological disease. For most of my life, I knew something was different, but I never had an explanation. I was always the slowest runner, struggled with coordination, and often felt weaker than my peers. I learned to adapt and push through challenges, assuming they were simply part of who I was.
In 2021, while pregnant with my first daughter, I underwent routine genetic testing. What started as a standard part of prenatal care became a life-changing moment. After years of unanswered questions, I was diagnosed with Late Onset Tay-Sachs at 30 years old. Receiving the diagnosis was overwhelming. On one hand, I finally had an answer for the symptoms I had experienced throughout my life. On the other, I learned that I was living with a rare disease that has no cure and limited treatment options.
Affects of Late Onset Tay-Sachs
Late Onset Tay-Sachs affects muscle strength, balance, coordination, speech, and mobility. Over time, I have experienced increasing weakness and challenges with activities that many people take for granted. Physical therapy, including aquatherapy, has become an important part of maintaining my strength and independence. Rather than building muscle, my goal is to preserve what I have and slow further decline.
The diagnosis also opened my eyes to the realities of living with a rare disease. Finding knowledgeable doctors, accessing specialized therapies, and connecting with others who truly understand the journey can be incredibly difficult. Fortunately, I found support through the rare disease community, including the National Tay-Sachs & Allied Diseases Association, where I learned that I am not alone.
Supporting Research & Advocating for Families Affected by Rare Diseases
Today, I am a wife, mother of two amazing daughters, special education teacher, advocate, and researcher participant. While Tay-Sachs has changed the course of my life, it has not taken away my determination. I share my story to raise awareness, support research, and advocate for earlier diagnosis and better resources for families affected by rare diseases.
Hope is what drives me forward. Every conversation, every donation, and every research breakthrough brings us one step closer to better treatments and, ultimately, a cure. Together, we can turn awareness into action and create a brighter future for everyone affected by Tay-Sachs.
Ways to Give
Mail or Phone
(617) 277-4463
Checks payable to NTSAD.
Mailing Address:
2001 Beacon Street
Suite 204
Boston, MA 02135.
