Spurred on by many family members and friends who have voiced an interest in contributing funds towards Silas' potential future medical or therapeutic bills, we have created an account specifically for this purpose. Gene therapies are a whole new frontier for science, medicine and also health insurance. What price tag do you put on a potential cure? The gene therapy for Spinal Muscular Atrophy earned a $2.1 million dollar price tag last year by the FDA. We hope that Silas' future treatments will be affordable but we need to prepare, nonetheless!
ABLE accounts are a great way for us to save for Silas' needs in a safe way that will not affect his federally insured disability benefits. The account can be used for anything that improves Silas' quality of life, including education, caregivers, assistive devices and medical care. So what is an ABLE account?
-An ABLE account is a savings account/mutual fund that is set up through the state specifically for disabled individuals.
-The account can hold up to $100,000 total before it is considered a resource by the government.
-The total annual amount allowed to be invested is $15,000
-Anyone can contribute to this account online without any fees at all! 100% of your contribution goes directly into the account.
-Your gift may be able to be deducted from your state taxes! Check with your tax person.
How do you give?
Thank you all in advance for any donation or gift. Its not easy to ask for this type of assistance but some day it will open the doors for Silas to get unbelievable treatments and services. Special thanks to Catherine Hommes and Joe Sunderland for spurring us on to get this set up!
Silas is three years old and was diagnosed with Angelman Syndrome two years ago. This is a rare neurogenetic disorder caused by a random deletion on his 15th chromosome. Angelman Syndrome causes global developmental delay, lack of speech, poor coordination and movement, and seizures. We raise funds for the Foundation for Angelman Syndrome Therapeutics (FAST) which is directly funding multiple potential cures for Angelman Syndrome which will enter clinical trials in the next year. One hundred percent of the funds Team Silas raises go directly towards this research.