I was diagnosed with Stiff Person Syndrome (SPS) and the Foundation has provided us with research and pathways to help. As it a rare disease, the Foundation provides me with a community
The Stiff Person Syndrome Research Foundation, Inc. is a fabulous organization that brings doctors, and patients together to share knowledge, experiences, and the work that lays ahead. It is a pivotal resource on information on the disease, the research that is being done, and patience stories that helps others connect, feel hopeful and included.
I was diagnosed with SPS in 2011, and thanks to the SPSRF's tireless work, I finally feel that this devastating disease has a legitimate voice. The foundation has given me hope that there will be a cure.
Having had the privilege to consult for The Stiff Person Syndrome Research Foundation, I can attest to the unparalleled dedication and commitment of their team. From our very first interaction, it was evident that this is a group driven not just by a mission, but by a deep-seated passion to make a difference in the lives of those affected by Stiff Person Syndrome.
Their meticulous approach to every initiative, combined with an unwavering focus on community engagement, sets them apart. The SPSRF team consistently goes above and beyond, ensuring that every project, campaign, and outreach effort is executed with precision and heart.
But beyond their professionalism, what truly stands out is their genuine care for the broader SPS community. They don't just work for a cause; they immerse themselves in it, fostering a sense of unity, hope, and resilience among community members.
In my 25 years of experience in brand strategy and marketing, it's rare to come across an organization that embodies its mission as authentically and fervently as The SPSRF. I wholeheartedly commend their efforts and am confident that with such a dedicated team at the helm, the future is bright for all those connected to the SPS community.
When I first learnt I might have Stiff Person Syndrome, I went online to look for patient stories. I had read up what Wikipedia, Mayo Clinic and the rest said and I just wanted to see someone who had come out of it. I saw an online magazine article featuring Tara Zier and she was RUNNING! Her doctor was a familiar name by then Dr. Scott Newsome.
I had been down so long getting worse by the minute and there I saw hope. I did the obvious next step, googled her, lol. Google gave me her Facebook handle and I sent a message and she responded so fast. SPSRF was still a growing seed in her mind at the time from what she told me but looking back she must have already started out the first steps by then.
I have watched Stiff Person Syndrome Research Foundation grow in leaps and bounds.
They have held my hand during really tough times. highlighted my story when I was raising funds for treatment. Better still as a young fledgling organization then, they dug deep in their own pockets to give a huge chunk of what I needed.
SPSRF is filling a huge gap that is there about what is known about the disease. The stories they continuously feature break so many of the long held myths about SPS. Their goals to have more research done on the disease give me so much hope as a patient, Their campaigns inform and create awareness and their website is a place I send people who ask me about SPS to visit for simplified breakdowns on the condition. They are truly inspiring.
I have personally been inspired to do whatever small bit I can to create awareness something my neurologist just this Wednesday said was very key since we do not have any organizations, patient support groups and the like in my part of the world. We have very few officially diagnosed patients but I believe there are many misdiagnosed people suffering because awareness isn't just lacking with the public, our doctors 99% have never heard of it. In my own family a gynecologist, a cardiac specialist called it a made up disease when it was first proposed and I listened to them until a renowned rheumatologist some years later brought it up again and started me on average doses to treat SPS while I waited for a neurologist to run the required tests to confirm the diagnosis.
For me, SPSRF are my personal champions, cheerleaders and inspiration. I look forward to their growth, expansion and for them to reach their goals and supersede them.
The SPSRF is a young and growing organization, that is doing it right. As a fundraiser for more than 30 years with experience at national organizations, I have been impressed with this team and their willingness to learn and try new activities. The people associated with SPSRF are pros in every sense of the word and bring their best selves and best ideas to the group. When we meet together, we are open to all ideas and everyone is heard. From that base, we create ideas and plans that are fueled by inspiration and passion. Not only are we doubling the amount of money raised this year from last, we hold ourselves to a high standard of fundraising ethics and donor privacy. Donors can be assured that their gifts are being used responsibly and for good purpose.
Thank you for raising awareness for me, another SPS unicorn! I fight alongside you all! It is truly a one in a million relentless battle, and we all want effective treatments and helpful communities for this devestating rare disease like the help and support The Stiff Person Research Foundation offers us.
My son Michael was diagnosed with Stiff Person Syndrome when he was just 12 years old. Michael spent over 7 months in an academic medical center hospital with lots of medical experts trying to get to the correct diagnosis and treatment. I am a kidney doctor, retired about a year ago. All I knew about SPS could have been summarized in two short sentences.
When Michael was diagnosed I quickly started learning about this obscure rare illness. Information about the illness was filled with disappointment, fear, and frustration. The etiology is not certain, the treatments are only sometimes helpful, and there is no cure. In addition, there are very limited funds for SPS research. In part that is because SPS is one of about 10,000 rare diseases. However in total there are 25 - 30 million people in this country with a rare disease. That does not include all the family members that are so often deeply impacted by their loved one having a rare and difficult illness. So limited treatments and very limited research.
Michael's course has been plenty difficult with many days filled with muscle spasms and pain, and lots of nasty weeks and months. My wife, who is also a physician, and I knew that we could find ways to help support progress in the care of SPS patients. I learned about the SPSRF in 2021 and have been fully engaged since. In such a small and new organization we have multiple roles though mostly I serve on the Board and separately chair the Medical Advisory Board (MAB). We are fortunate to have three leading SPS physician experts who have joined the MAB.
I describe the SPSRF as a seedling being so new, though rapidly growing with increasing infrastructure, lots of nurturing from a very committed core group, and the recipient of a crucial grant from the Chan Zuckerberg Initiative. We have so much to accomplish and the sooner the better. Supporting research, promoting awareness of the disease in the medical community, and helping bring the SPS community together especially through education are just a start. We will be launching a crucial patient registry which will provide vital information about people with SPS who might be willing to participate in research studies.
Doing this work has become the focus of my retirement. The progress is so slow though the little pieces add up and we are definitely further along than a year ago. Michael is a junior in college and has found ways to manage with his pain and SPS. Hopefully this work will contribute to more successful treatments and a cure.
I found the SPS Research foundation last year when I first got diagnosed in Lebanon, the resources on the website helped me discover Dr. Scott Newsome who is now head of my care team for SPS and it also allowed me to connect with their medical volunteers and other members of the community who also have SPS.
Most recently, it gave me a safe space to tell my story on their website and via their social media channels and I am so grateful I was offered a safe space to share my story!
It’s the first time I have decided to tell my story, why you ask? Because during my non stop journey during these long years I wish I had had read more stories and I had been able to reach out to more people… who knows it might have made a difference.
This is when I started researching, reading, and looking for answers and I realised how little was available but how could it be any different if I was the 1 in a million.
This year has been tough and challenging, finding a treatment that works is still an arm length away. I am doing much better than at my worst a few months ago when I could barely stand, where all kind of noise and visual stimulation would put me in a terrible shape and where I thought things couldn’t get much worse. I will admit it is hard to accept especially at 35 that your body will never be the same. It is hard to see it not cooperate, to have to walk with a cane and to ultimately know this is a progressive disease with no cure. But this has pushed my determination to speak out, want to raise awareness and to be part of the solution.
I am choosing to focus on raising awareness, and hope to do so more and more with the SPS Research Foundation.
Thank you SPS community for allowing me to tell my story and hopefully inspiring others to share theirs.
I’m an intern at SPSRF. I love the work I do, and I really love helping this foundation. The people I work for and with are super helpful, nice, smart, dedicated and driven. This foundation supports such an important cause, and I think it’s doing a great job.
The SPSRF does tons of work to educate and raise awareness, and they work hard daily to achieve that.
Working with the Stiff Person Syndrome Research Foundation (SPSRF) is one of the best experiences of my life. We're all united in one mission: to find better treatment and a cure for stiff person syndrome (SPS). In keeping with this mission, we support each other, patients (diagnosed, undiagnosed, and not-yet-diagnosed), and their families. SPSRF is a glimmer of hope in a world that doesn't care about ultra rare diseases as much as it ought to.
This small but dedicated and mighty group of people managed tremendous feats in only a few years, including securing a grant from the Chan Zuckerberg Initiative, becoming a NORD Platinum member, and donating money for research into SPS. SPSRF has even better, bigger, and more ambitious plans in the next few ears, many of which are currently in motion. I can't wait to see where we go next, but I know it won't be short of greatness!
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.
Before I met Tara, I had never heard of Stiff Person Syndrome (SPS) and gave little thought to rare diseases and the people who live with them. Learning her story, and having the opportunity to work with her has been nothing less than life-changing.
As a leader, Founder, and CEO, Tara is curious, caring, and mission-focused. She is a steward of an idea - a movement, even - and demonstrates the utmost integrity and gravity, truly operating with only the success of the mission in mind. What she does not know, she learns into and gathers the best minds available to weigh in. Tara is also a mom and a patient with SPS, which makes the organization accomplishments even more remarkable knowing that every day is a battle with her body and this disease.
And this disease is brutal assault on the body and mind, delivering potentially bone-breaking spasms, near-constant pain, and the potential for complete disability. It is defined as rare most likely due to under-diagnosis -- on average it takes 7 years to diagnose, and it disproportionately affects women.
Tara and The Stiff Person Syndrome Research Foundation are on a mission to end SPS and horrendous diagnostic odysseys, and to be a blueprint to eliminate all rare disease. It is a point of pride to be able to say I've worked with Tara and this team, and incredibly gratifying because if anyone can achieve this mission it is The SPSRF that Tara has built.
I met Tara when I was a reporter for ABC in Washington, putting together a segment on a rare disease with an unusual name: Stiff Person Syndrome. Tara suffers from SPS and had a dream to create a foundation to raise funds for research for better treatments and a cure. Three years later, Tara is deep into realizing that dream, with an impressive foundation that was awarded a Chan Zuckerberg Initiative/Rare As One grant. She has formed a medical advisory board of the country's top SPS neurologists (Mayo Clinic, Johns Hopkins), a board of directors, and an experienced staff of fundraisers, a web developer, and a social media and media expert. Tara is a tireless advocate for a cure for SPS. Her foundation is expanding its reach daily, connecting to patients globally, and creating worldwide awareness of a little-known but devastating rare disease.
I've worked for more than 20 years in the nonprofit sector and can say with confidence that it has been an absolute pleasure being involved with such a driven organization! Their mission is clear and the work that supports their mission is intentional and powerful. I've had the honor of working alongside Tara, a Stiff Person Syndrome patient and leader in the SPS community. The organization raises awareness about the challenges and needs of SPS patients, shares valuable educational resources and supports research efforts for the rare and underfunded disease. While The SPSRF was created by Tara, the organization is now supported on a global level - a true testament to the need and timeliness of the work.
The SPSRF excels in building relationships within the SPS community, engaging with patients, caretakers, medical professionals and funders all with the shared investment of finding a cure for the Stiff Person Syndrome. The organization is strategically growing with transparency to the public which is a unique and appreciated operational trait.
It is a true honor to be a part of such a worth cause!