Late Onset (LOTS)
Tay-Sachs, Sandhoff and GM1 diseases
If you are affected by LOTS, housing is an important consideration. Your needs will change, depending on how much support you need and what you can afford. Planning your long-term housing needs will empower you to live independently, comfortably and safely as the disease progresses. NTSAD can help you find the housing option that best meets your needs.
Think about home modifications and services you'll need 5, 10, or even 15 years down the road and plan accordingly. Give yourself plenty of time to find the services, funding and resources to live safely and independently. Don't wait until you are unable to safely use the stairs or bathroom.
Many people affected with LOTS live with family members, including a spouse, parents, children, siblings, or other relatives. In some cases, you might be eligible for a certain amount of assistance with daily care if your family members are unable to provide the kind of care you need.
Also see Independent Living