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Stiff Person Syndrome Foundation in USA 2023-08-12 17:12:46

Stiff Person Syndrome Foundation

https://stiffperson.org/about-the-spsrf/board-of-directors.html 

Employer Identification Number (EIN)

84 - 2291780

Mailing Address

8621 Burdette Road, Bethesda, MD 20817, United States

Email  info@stiffperson.org

https://www.facebook.com/TheSPSRF 

Tara Zier, DDS Tara Zier, DDS   FOUNDER & CEO

Dr. Tara Zier co-founded Smiles dental practice in Fairfax, Virginia and later joined an Alexandria practice. When Stiff Person Syndrome tried to hijack her life, she decided to establish the Stiff Person Syndrome Research Foundation to raise money for development of treatments and a cure. Tara has established relationships with people at the Stiff Person Syndrome Center at Johns Hopkins, the Mayo Clinic, and patients around the world.

James Weiss, MD James Weiss, MD   Board Member

Dr. Jim Weiss recently retired from practicing nephrology in Pittsburgh, Pennsylvania. One of his sons was diagnosed with Stiff Person Syndrome as a young teenager. Both of his children have another rare disorder, Gaucher disease. Jim is a cofounder of a western Pennsylvania organization focused on care for underserved communities.

Lara Vujovic, PhD Lara Vujovic, PhD  SECRETARY

Lara earned her PhD in psychology from Tufts University and currently works as a user researcher. She’s motivated to find better treatment and ultimately a cure for Stiff Person Syndrome.

Helena Zec Helena Zec   Board Member

Helena earned her PhD in biomedical engineering from the Johns Hopkins School of Medicine where she was recognized as a Medtronic Scholar. She holds five provisional patents from her research on developing systems for high-throughput diagnostics and has published more than 20 peer-reviewed papers and journal publications. Helena holds a master of science degree in molecular bioengineering from ETH Zurich, and she received her bachelor of science in biomedical engineering from Worcester Polytechnic Institute.

Our Founder's Story

Some of this may be hard to read. It was certainly hard for me to write. But it is my story and hopefully sharing it will help people in some way. I have learned that everyone goes through difficult times and how you respond to them is key.

Life drastically changed for me in 2014. I was a dentist. I traveled with my kids. I was training for my fourth-degree black belt. I never gave my health a second thought. And one day it all changed when my former husband, Dave, tragically passed away. My kids were eleven and thirteen at the time. I was working, dealing with attorneys, and managing multiple properties. But the biggest concern for me was my kids. They had just lost their Dad. Were they going to be okay? They were just kids. My stress level was through the roof. I felt so much pressure to be alive. This was the beginning.

I was worried that this heightened stress could damage my body. It became crystal clear that my health was my number one priority. So, I changed primary care doctors from someone I didn’t know well to a VIP doctor I had seen in the past. There was a sense of urgency for me to do this. I thought paying for concierge medicine equated to better doctors and better care. I was wrong. I got pneumonia three months after Dave died and things spiraled downhill from there. During the next two years I experienced a myriad of symptoms including shortness of breath, fatigue, and excruciating neck and back pain. It was so bad I rushed to the ER several times only to leave with no answers other than “You don’t have anything life-threatening. Follow up with your primary care doctor.” I consulted numerous specialists. My primary care doctor told me it was just stress, prescribed anti-anxiety medicine, and recommended a follow up visit a few months out. I will never forget his words. He leaned into my face and said, “I don’t know why you keep going from doctor to doctor. This is stress.” My response was, “If you felt the way I feel, you’d be doing the same thing. I know I am stressed, but I am also sick. And I need help.” I was outraged. I changed doctors again. This would be the first of many discouraging, useless medical encounters.

My health continued to unravel. I started experiencing a rapid heart rate, insomnia, and difficulty eating. I lost 30 pounds in a month. I felt so sick I could barely get off of the couch. It was awful and relentless. I had to stop working. I couldn’t drive. I was concerned that I was going to die. My in-laws visited to help. When they left, I had to hire someone to help me get through the days and drive my daughter to soccer practice. I hated my kids seeing me like that. They had been through so much grieving their father. Now they were watching their once-capable mom, fading – sickly thin, relegated to the couch wrapped in heating pads.

I was desperate to find answers. A diagnosis, whatever it was, would be better than these mystery afflictions. As the symptoms emerged, a friend described her nervous system disorder and a light bulb went off in my head. I thought, “THAT is what I have.” And sure enough a doctor diagnosed me with the nervous system disorder my friend had – dysautonomia. Finally an answer. And better still, he predicted I would recover within two years. I felt hope. Finally, a light at the end of the tunnel. Or, so I thought.

But months later, new symptoms appeared. The left side of my face became numb, my hips felt weak, and then even walking became difficult. My primary doctor sent me to a top local neurologist. He listened to my story, ran a battery of tests, and promised to call soon with the results. The anticipation was killing me.

It was a Monday night when I received his call. He said, “All of your tests came back normal except for one, your GAD antibody test. That means you have Stiff Person Syndrome.” I immediately began searching the internet. My head was spinning. What was Stiff Person Syndrome? Was there a cure? Have patients gone into remission? Who are the best doctors to see for this?

I learned Stiff Person Syndrome (SPS) is a neurological disorder with features of an autoimmune disease. Symptoms include debilitating pain and muscle spasms. Currently there is no cure. I found no indication that any patient had ever achieved full remission. Now I am living with this thing. It wasn’t over then, and it still isn’t over. Despite consulting the top SPS doctors in the country, trying many different medications, powering through pain-rehab, participating in low impact exercise, and working with a nutritionist, I am still struggling. Every day I am educating myself and doing what I can to get better. I am taking a course on autoimmune disease and experimenting with holistic methods of healing. My goal is two-fold: to find a way to remission and to teach my kids how to handle adversity.

The problem is there aren’t great treatments for SPS. There are medications that help dampen the symptoms but they, like all meds, have undesirable side effects. There are immunotherapies available, but they have serious risks and don’t work well for everyone. We need research to gain a better understanding of this syndrome, its causes and remedies. The main purpose for me in establishing this foundation is to raise money for this necessary research.

Research money is slow in coming because SPS is considered rare. Estimates indicate only one-in-a-million people have SPS in the U.S. But the true numbers are likely higher – SPS mimics other diseases, like Multiple Sclerosis (MS), psychosomatic illness and other autoimmune diseases. On average it takes a staggering seven years to determine a patient has SPS oftentimes after they are fully disabled.

I am on a mission to change that.

Tara Zier
Founder & President
The Stiff Person Syndrome Research Foundation


Emotional Trauma May Have Triggered Maryland Woman's "Human Statue" Disease

From WJLA-TV, Washington, DC

席琳效应:僵人综合症获得强有力的声音

https://rarediseases.org/celine-dion-stiff-person-syndrome/

作者:Peter L. Saltonstall 和 Tara Zier 2023 年 3 月 15 日 作者:NORD

多年来,著名歌手席琳·迪翁一直饱受严重肌肉痉挛和四肢僵硬等神秘症状的困扰,这些症状阻碍了她行走的能力,并影响了她日常生活的方方面面,包括演唱使她成为国际偶像的歌曲。 最近,她得知了原因。

迪翁在十二月中旬宣布,她被诊断出患有僵人综合症,这是一种罕见的进行性神经系统疾病,会导致躯干、手臂和腿部肌肉僵硬; 对噪音和触摸更加敏感; 情绪困扰会引发严重的肌肉痉挛,导致骨折、关节脱臼,并导致危及生命的呼吸问题。

公开个人健康问题需要真正的勇气——当诊断结果是一种基本上不熟悉的疾病、具有明显不寻常的名称并且只影响大约百万分之一的人时,可能更是如此。

然而,通过分享她的故事,迪翁为 2500 万患有 7000 多种罕见疾病的美国人发出了声音和希望。

迪翁愿意谈论她的诊断也为我们的组织提供了一个机会,呼吁人们关注罕见病患者和护理人员的独特需求。

国家罕见病组织 (NORD) 作为罕见病领域的领军人物,今年庆祝其成立 40 周年。 NORD 提供患者宣传和教育、支持研究、建立合作伙伴关系并指导 340 多个针对特定疾病的患者组织,例如僵人综合症研究基金会 (The SPSRF)。

SPSRF 的诞生源于 Tara 的个人经历。 2014 年,她开始出现一系列症状,最终导致她大部分时间都蜷缩在沙发上,无法继续担任牙医。 最终,在经过多年的求医之后,2017年,她被诊断出患有僵人综合症。

同年晚些时候,当她在约翰·霍普金斯大学的神经科医生告诉她,由于现有研究不足,他被美国国立卫生研究院拒绝资助研究僵人综合症时,塔拉决定采取行动。

2019 年,她创立了 SPSRF,以提高全世界的认识并为更好的治疗和治愈提供资金。 如今,该基金会组建了一个由一些世界顶级神经科医生组成的医学顾问委员会,并通过教育和合作为患者提供支持。

我们都非常熟悉与罕见疾病相关的独特挑战。 例如,平均需要惊人的七年时间才能确定患者患有僵人综合症。 可悲的是,这种诊断通常是在他们完全残疾之后才做出的。

即使患者被诊断出患有僵人综合症等罕见疾病,他们也常常很难找到熟悉其病情或信息和资源的医疗专业人员来帮助他们及其家人应对疾病。

席琳·迪翁的诊断包括多年的不确定性,它告诉我们,即使是那些拥有名人地位和充足资源的人也不能幸免于这些挑战。

当迪翁专注于自己的病情时,我们的心与她同在。 她愿意公开的意愿为那些在阴影中受苦的人提供了灵感,并已经帮助提高了对罕见疾病的认识和理解,从而为研究和资源筹集了更多资金。

NORD 的座右铭是:“孤独的我们是稀有的。 当我们在一起时,有了更大的力量。” 席琳·迪翁对罕见疾病的关注预示着我们可以共同更好地了解罕见疾病的破坏性影响,并让那些患有罕见疾病的人知道他们并不孤单。

The Celine Effect: Stiff Person Syndrome Gains a Powerful Voice

https://rarediseases.org/celine-dion-stiff-person-syndrome/?

Posted March 15, 2023 by NORD 

By Peter L. Saltonstall and Tara Zier

For years, famed singer Céline Dion dealt with mysterious symptoms of severe muscle spasms and stiffening in her limbs that hampered her ability to walk and affected every aspect of her daily life – including singing the songs that have made her an international icon. Recently, she learned the reason why.

Dion announced in mid-December that she had been diagnosed with Stiff Person Syndrome, a rare progressive neurological condition that can cause stiffness in muscles in the trunk, arms, and legs; greater sensitivity to noise and touch; and emotional distress, which can set off muscle spasms so severe they can break bones, dislocate joints, and cause life-threatening breathing problems.

It takes real courage to go public with personal health issues — perhaps even more so when the diagnosis is a largely unfamiliar condition that carries a decidedly unusual name and impacts only about one in every 1 million people.

Yet by sharing her story, Dion gave voice and hope to the 25 million Americans who are living with more than 7,000 conditions that have been classified as rare diseases.

Dion's willingness to talk about her diagnosis also offers an opportunity for our organizations to call attention to the unique needs of rare disease patients and caregivers.

The National Organization for Rare Disorders (NORD) this year celebrates its 40th anniversary as the leading voice for the rare community. NORD provides patient advocacy and education, supports research, forges partnerships and mentors more than 340 disease-specific patient organizations such as The Stiff Person Syndrome Research Foundation (The SPSRF).

The SPSRF was born out of Tara's personal experience. In 2014, she started experiencing a host of symptoms that ultimately left her spending many of her days huddled on a couch, unable to continue working as a dentist. Finally, in 2017, after years of going from doctor to doctor, she was diagnosed with Stiff Person Syndrome.

Later that same year, when her neurologist at Johns Hopkins told her he was denied an NIH grant to study Stiff Person Syndrome because there wasn’t enough existing research, Tara decided to take action.

In 2019, she founded The SPSRF to raise worldwide awareness and funds for better treatments and a cure. Today, the Foundation has assembled a medical advisory board consisting of some of the world’s top neurologists and provides patient support through education and collaboration.

Both of us are all too familiar with the unique challenges associated with rare diseases. For instance, on average it takes a staggering seven years to determine a patient has Stiff Person Syndrome. Tragically, that diagnosis often comes after they are fully disabled.

Even after patients are diagnosed with a rare disease like Stiff Person Syndrome, they often struggle to find medical professionals versed in their condition or information and resources to help them and their families navigate the disease.

Céline Dion's diagnosis, which included years of uncertainty, tells us that even those with celebrity status and ample resources are not immune from these challenges.

Our heart goes out to Dion as she focuses on her condition. Her willingness to go public provides inspiration for those who suffer in the shadows and has already helped raise awareness and understanding of rare diseases to generate more funding for research and resources.

NORD's motto is, “Alone we are rare. Together we are strong.” The spotlight that Céline Dion has shined on rare diseases offers promise that together we can gain a greater understanding of the devastating impact of rare diseases and can let those with rare diseases know they are not alone.



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