About Us

The only SMAS non-profit to provide direct financial support to patients.

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OUR MISSION

We are dedicated to promoting research for SMAS, educating about this rare disease, advocating for early diagnosis, and providing patient support.

 

We are the only registered 501c3 nonprofit for SMAS that provides financial assistance to patients. Our 100% unpaid volunteers ensures all donations directly benefit SMAS patients.

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OUR IMPACT

373

$7282

88

grant recipients

in donations to patients

research projects funded

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FUNDING RESEARCH

We provide funds to the IFFGD, where SMAS researchers can acquire funds for their research.

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SPREADING AWARENESS

Our efforts educate both the public and medical community about this rare disease to encourage early diagnosis.

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PROVIDING SUPPORT

We provide financial support and resources to patients to find providers and obtain treatment.

Meet Our Board

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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.

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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.

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Jean Clark
Secretary

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Eloise Larson
Treasurer

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Staci Gruber
Patient Liason

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Reagan Whelan
Admin Assistant

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Get Involved

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EDUCATE

Help us bring more awareness to this rare condition.

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DONATE

100% of your gift directly benefits paitents.

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SHOP

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.

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 Stacy 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.

Testimonials

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