About Us
The only SMAS non-profit to provide direct financial support to patients.
60
OUR IMPACT
37,000
5,011
grant recipients
grant money to patients
support group members
FUNDING RESEARCH
We provide funds to the IFFGD, where SMAS researchers can acquire funds for their research.
SPREADING AWARENESS
Our efforts educate both the public and medical community about this rare disease to encourage early diagnosis.
PROVIDING SUPPORT
We provide patient support through a private group and discovering resources near patients.
Meet Our Board
Tara Williams
President & Founder
I've struggled with chronic illness my entire life from migraines due to my rare syndrome of Syringomyelia. Even though I knew I was rare I had no idea of the "Rare realm" I would encounter. In 2011 my mom was in a severe car accident which lead to SMAS. It took 18 months for her to be diagnosed and at diagnosis we were lead to believe that one in three die. Advocating and raising awareness has become my passion.
Sue Kibby
Vice President
I was diagnosed with SMAS in 2015. I had gone from 135 pounds down to 81, had at least 6 abdominal surgeries, 3 PICC Lines for TPN and hydration. I also suffer from gastroparesis, have a J tube for feeds and medications, and a separate G tube in my stomach to vent and drain. Hello, I'm Sue, I am on the board of directors for the SMAS non-profit. I make cards for the LiLi Luxe Card campaign. I sew my own tubie pads, accessories, and enjoy quilting. My sewing allows me the opportunity to donate to the SMAS Patient Assistance.
Fiona Bishop
Social Media
Fiona is a 3rd year nursing student. She was diagnosed with SMA Syndrome, Gastroparesis, and MALS. Navigating the healthcare system as a non-pediatric patient has been challenging, but she was fortunate to find knowledgeable and caring doctors. She has also discovered during her journey that she is educating so many people about SMA Syndrome, both in and out of the healthcare profession. Her goal is to help communicate information and raise awareness about this rare condition so others will no longer have to suffer so long from misdiagnoses and improper care.
Staci Gruber
Patient Liason
Reagan Whelan
Admin Assistant
Get Involved
EDUCATE
Help us bring more awareness to this rare condition.
DONATE
100% of your gift directly benefits paitents.
SHOP
The purchase of SMAS gear provides funding for SMAS research.
Anonymous
This group is amazing. Everyone is kind, friendly and always ready to help if they can. I don’t know where my daughter would be without their support.
Testimonials
Brittany S.
I am so truly blessed to have the SMAS nonprofit organization in my life and throughout my journey! They have made so many wonderful things happen that I couldn’t have on my own. The biggest shout out to Tara and Staci for genuinely caring about all the Warrior’s who suffer from compression syndromes and for wanting to make change and for wanting to make a huge positive difference in all of our lives! I honestly do not know what I would do without them. The SMAS Nonprofit Organization and all of the many wonderful people running it are a blessing from GOD. GOD BLESS YOU ALL!
Share your experience with SMAS Nonprofit
Deborah S.
Friendly group always going the extra mile to help others. Great information for newly diagnosed people or family and friends trying to understand. Good resource if you are trying to find a doctor or surgeon within your state.