About Us
The only SMAS non-profit to provide direct financial support to patients.
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.
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 financial support and resources to patients to find providers and obtain treatment.
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.
Jean Clark
Secretary
Eloise Larson
Treasurer
Staci Gruber
Patient Liason
Reagan Whelan
Admin Assistant
Jayme Jones Blue
Community Outreach Director
Hello, my name is Jayme. Ever since I was just a little girl, I have struggled with being sick and with that struggle came the fight to get answers about what was causing me to be so sick. Finally after many years of constant testing and not getting answers that were so desperately needed as I continued to get worse and worse as the days went by; back in 2017 I finally found out about having Superior Mesenteric Artery Syndrome and a year later I found out I have Nutcracker Syndrome as well. SMAS is an illness that has lead me on a journey of discovery, fear, anxiety, relief and sadness over the years; an illness that has completely changed my life. Due to the rareness of this illness, many families experience difficulty finding medical providers that are familiar with this diagnosis; that is why awareness is so extremely important to me. Awareness can help to bridge this gap, educating families and medical professionals about SMAS and providing better care for affected individuals. Awareness is something I believe in 365 days of the year and no matter what day it is, I’m always trying to get the word out about this illness. I look forward to being apart of this team and shining the light needed on this illness.
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.