Have you or a loved one been diagnosed with ALS?

Advice and Resources

Getting diagnosed with ALS can be shocking. When Jay was diagnosed in 2014, we did not know what to do or the resources available. Since then our family has become a resource and sounding board for other ALS families. Feel free to contact us if we can help.

1. Look for an ALS clinic near you, usually at a major hospital.
2. Contact the ALS Association in your area at ALS.org. They can direct you to ALS clinics, clinical trials, equipment, support groups. We have found most of our caregivers through them.
3. Contact and visit ALS Therapy Development Institute in Boston. They are a group of dedicated scientists determined to find a cure for ALS. 617-441-7200.
4. Apply immediately for disability insurance at ssdiguide.com. Remember that your children are also eligible.
5. Check with your insurance company to see if any of the care you are going to need is covered. In Jay's case, none of it was covered and it can be expensive, especially as the amount of care can be dramatically increased as ALS progresses.
6. Contact a trust attorney and set up a trust. This account is registered with the IRS. That way you do not have to pay taxes on the contributions you receive. These funds can be used for medical care, caregiving, and items related to ALS such as equipment and household expenses. It is not a 501(c)3, so donors cannot deduct their donations from their taxes. (We also have a 501 (c)3 Foundation, the 90Foundation which cannot personally benefit our son, but we can donate to other ALS families as well as research).
7. IMPORTANT: Begin planning fundraisers for your Trust! Start out small and build on each event. You will be amazed at how much others want to help. Contact us if you want any suggestions or ideas.
8. Think about what your home is going to need down the road: retrofitting bathrooms, adding ramps and begin to set funds aside.
9. Accept help from others: meal train, visitations, etc.
10. You will need a van at some point. Contact Hark, Inc., a non-profit that helps. 908-642-4321 (Donna York)
11. For emotional support, join an ALS support group and/or consider counselling.
12. Hope Loves Company has a FREE camp for kids whose parents have ALS. 609-730-1144.
13. Join an on-line group such as Facebook ALS Caregivers.
14. Reach out to local Foundations (Rotary, Lions, Private Foundations) to help with expenses.
15. ALS can be isolating to patients, caregivers, and families. Build a team of friends and family that can help.