My Nonprofit Reviews

I can't say enough wonderful things about this organization. I have been involved with NORD since 2018 after I was diagnosed with a rare disease called Stiff Person Syndrome. After realizing that funding for research was a challenge, I reached out to them for information as I was told they are the leaders in the rare disease space. From the first contact, I was hooked. They directed me to different resources and were supportive in my efforts to start The Stiff Person Syndrome Research Foundation in 2019. Since then, it's been nonstop collaboration! I got to share my story as a rare disease patient and was on a panel with my neurologist and three other groups at the "Living Rare Living Stronger Forum" in 2021 which highlighted the importance of patient/doctor collaboration. NORD has helped us with multiple organizational aspects for the foundation. Their support is tremendous. They offer many resources including conferences, webinars, and programs to educate and support the rare disease community. It is a pleasure to work with their team as they are kind and passionate about the cause. Our foundation is proud to say we are members of this wonderful organization.

I have a rare disease called Stiff Person Syndrome. It took me three years, 13 specialists, and 9 ER visits before I was finally diagnosed in the fall of 2017. It was around my third visit with my neurologist at Johns Hopkins when he told me they had recently applied for a grant for research at NIH and were denied because there was not enough research to support getting the grant. That blew my mind. I was in debilitating pain. I couldn't work. I couldn't take care of myself or my kids. There were no good treatments and no cure. That was my ah-ha moment. I knew I had to do something. First, was on the news with Hopkins to raise awareness since no-one I encountered had heard of this disease. And running from doctor to doctor in crisis being medically mismanaged and misdiagnosed for years was flat out unacceptable.

Second, there was the major issue of Hopkins not being able to get a research grant from NIH.
I knew we needed to raise money to drive research. That's why I started The Stiff Person Syndrome Research Foundation with a mission to raise awareness of Stiff Person Syndrome (SPS), to support research for better treatments and a cure for SPS, while strengthening our community through education and collaboration. I wanted to show my kids that no matter what hand you are dealt, you can still make a difference in the world.

Since inception in late 2019, we have grown our Board, developed a Medical Advisory Board to include three of the experts in Stiff Person Syndrome, and grown our team to accommodate the organization's needs to support our growth and mission.

In 2021, we were one of twenty rare disease organizations selected as a grant recipient for the Chan Zuckerberg Initiative Rare As One Program where they support rare disease organizations like ours with three years of funding support for building organizational capacity, networking with the other 49 rare disease organizations in the cohort, and trainings. It has been like a volcano erupting!

Our current initiative to support research is building a Patient Contact Registry and Natural History studies which is critical in driving research to get us to better treatments and a cure for SPS. We continually raise awareness by featuring patients on our website from all over the world, sending out newsletters, social media outreach, and media attention locally and internationally. We were even featured on the front page of the medical mysteries section of The Washington Post! We support our community by offering resources to them on our website including interviews from our experts, tips for advocacy, and responding to their inquiries.

I can't say enough about the people I work with. The Board, the Medical Advisory Board, Team members, Volunteers, Interns. Each and every person is committed to the mission and is why we have come so far. And is why we will continue to thrive. They are kind, caring people that go above and beyond and bring laughter and joy to our community and organization. I am filled with gratitude to work with such an amazing group of people.