June 28, 2016


The cost of caring for someone with SMA can be quite overwhelming.  Unfortunately there are many things insurance will only cover minimally or not at all.  Items such as environmental or home modifications, vehicle modifications, transportation to/from appointments, assistive technologies, and other medical or quality of life expenses aren’t covered.

We have a couple of different avenues to securely donate to Alexander:

  1. Single or monthly by Credit/Debit card:
  2. Contribute directly to Alex’s ABLE account electronically using an e-check:


Fundraising Goals

  1. Replacement manual chair for building muscle strength, Panthera Bambino. ($5,000 new)
  2. Ramp installation for wheelchair access to our home. ($2,500) We did it! Thank You!
  3. Van modification for wheelchair transport. ($500)
  4. Powered wheelchair add-ons: electronic lift, emergency shut-off remote (?)
  5. SMA Conference in Dallas, TX, Summer 2018 ($1,500)

Where does the money go?

Alexander is the sole beneficiary of his own ABLE (Achieving a Better Life Experience Act, 2014) account.  An ABLE account is a tax-sheltered savings account for individuals with disabilities.  Contributions to Alex’s ABLE account are only dispersed for qualified disability expenses, such as:  education, assistive technology, personal support services, health care expenses, and other expenses to support Alex’s independence.  The ABLE account allows Alex to maintain his insurance coverage.

All money from fundraising will be deposited on Alex’s behalf to his ABLE account.  Any fundraising purchase goals will be funded from this account as a qualified expense.

Cure SMA

Please also consider donating directly to SMA research via the Cure SMA organization.  If you would like to learn more or donate directly to support research and the cure, please visit http://www.curesma.org