Welcoming SRNA’s New Communication and Engagement Coordinator – Skye Corken

I am thrilled to be joining SRNA as their new Communication and Engagement Coordinator. SRNA has a strong focus on quality of life and a passionate drive for community connection —all things I value. I love creating meaningful experiences for people and to have the opportunity to do this in my new role is a great feeling.

I chose Global Health Studies as my degree because it is an expansive field that seemed to combine every academic interest I had. I loved the health side, but I also took several courses focusing on nonprofit organization management and became fascinated with learning how nonprofits function in society. After graduation, I decided to intern for one over in Ireland. My first big task was helping lead a multi-day corporate volunteer project redoing a school in Galway. At the end of day one, I knew my journey with volunteer management was just beginning.

Since my time in Ireland, I’ve grown both professionally and personally. I’ve worked in higher education, engaging both alumni volunteers and donors. I’ve learned the critical importance of strategy while navigating the vast world of digital communications. Mostly though, I’ve learned that the impossible really can happen with a great team. I’m grateful to all my past coworkers and teammates for teaching me that lesson.

Working with SRNA is a dream. This organization is doing fantastic work and has created an incredibly close-knit community —one that I can’t wait to get more involved in. I’m proud and excited to support SRNA’s mission in any way I can.

Celebrate Volunteer Week with SRNA!

This National Volunteer Week, we show our gratitude for the volunteers who give their energy and talents to be a force for good. From the very beginning, we at SRNA have depended on the generosity of volunteers to bring the community together, offer support, and do the important work we do every day.

Whether you love bringing people together or reading through research studies, if you have a knack for noticing every detail or prefer to spend your time talking on the phone, there are many ways to get involved and show your support. If you are wondering if there is a role that will be the right fit for you, we invite you to our upcoming Volunteer Information Session. Learn more about the different ways you can get involved and use your talents to improve the quality of life for those living with rare neuroimmune disorders.

Read below to learn why our volunteers got involved, what they do, and how you can get involved with SRNA too!

Support Group Leaders

Not only do they lead meetings, Support Group Leaders (SGLs) hold space for questions and connection. They create an open space for listening and sharing with others who understand.  Our SGLs reach out to SRNA members in their area to connect them with resources and bring the community together.

“I reach out to newly diagnosed people and to people with a new condition. I encourage them and help them find quality medical care for their needs. When not volunteering, I am the founder and executive director of a food pantry in my county. We serve 160 families per month. I love to quilt and embroider, and I have 12 grandkids.” – Ginger, Oklahoma Support Group Leader

“We already had a support group going, but then we affiliated with SRNA to help with virtual monthly meetings in 2020. After that, I got involved with the peer to peer program to help folks outside our local support group. When I’m not volunteering, I’m holding my household together. I like to read, work in the yard, enjoy visits with my three grandsons, and walk our red-heeler mix.” – Jodi, Georgia Support Group Leader

Peer Connect Leaders

SRNA Peer Connect Leaders (PCLs) offer one-to-one support to our community. They have completed a training program and are available to call, text, email, or video chat with members across North America. PCLs offer a listening ear and provide relevant resources as someone who understands the realities of rare neuroimmune disorders.

“It is important to me to make people feel connected to others with similar neuroimmune diseases. I know how hard this disease is and the loneliness and disconnect you can feel. I like the feeling of giving others hope and a listening ear. It’s been great connecting with others and showing them compassion and hope.” – Kylie, Peer Connect Leader

“I know how isolating a rare diagnosis is. I have always been very interested in psychology and how the mind works. I want to help as many people as I can to break out of the isolation and enjoy life. When I’m not volunteering, I run my own business and am a single mom to two amazing kids, a 14 year old son and 12 year old daughter.” – Selena, Peer Connect Leader

“I volunteer with SRNA to give back to my community that’s given so much to me. I volunteer by doing a little bit of everything! Communicating my story and talking with younger individuals with these illnesses would be my strong suits. Aside from volunteering, I love video games, I’m a major foodie, and I’m learning Spanish.” – Ireland, Peer Connect Leader

Walk-Run-N-Roll Volunteers

Over the years, Walk-Run-N-Roll (WRNR) volunteers have hosted events across the United States. These fundraising events support our programming and research initiatives while raising awareness and offering our community a special opportunity to connect.

“I have been involved with the SRNA since 2008 when I had my onset as soon as I got home from the hospital. Through the SRNA (then the TMA), I found several people to help me, including Deborah Capen and Barbara Sattler. I have been to several of the RNDS helped with several Walk Run and Roll events, including as Co-Chair with Barbara Sattler a walk Run and Roll in Tucson AZ in 2018.” – Julie, Support Group Leader & WRNR Volunteer

“I heard about the Peer Connect program and I knew I wanted to be involved because I think it’s important for peers to have support from others who understand what they are going through. I have also attended a WRNR in the past and knew that I wanted to volunteer to put together another event that can bring together the community for a great cause. When I’m not volunteering, I like to have game days and movie nights with my husband and our friends.” – Jennifer, Peer Connect Leader & WRNR Volunteer

We are so grateful for each person who invests their time and energy to support our mission by volunteering. Their dedication is inspiring. Thank you to our incredible volunteers!

Cleveland Clinic’s Pediatric Multiple Sclerosis and Neuroimmunology Center

By Dr. Aaron W. Abrams and Dr. Mary Rensel, Pediatric and Adult Neuroimmunologists at Cleveland Clinic

At Cleveland Clinic’s Pediatric Multiple Sclerosis (MS) and Neuroimmunology Center, our goal is to provide the best care possible to our patients and families. Our facility is one of 10 nationally recognized Pediatric MS Centers of Excellence by the US Network of Pediatric Multiple Sclerosis Centers and the National MS Society. We provide comprehensive care for children and adolescents with MS and other neuroinflammatory disorders.

At Cleveland Clinic, we believe strongly in multi-disciplinary care. Managing complex diseases requires a comprehensive and experienced approach. To achieve this, Dr. Aaron Abrams in the Pediatric Neurosciences Center works side-by-side with Dr. Mary Rensel in the Mellen Center for Multiple Sclerosis and other experts to collaborate on challenging cases, stay up-to-date on the most cutting-edge diagnostic and treatment technologies, and actively participate in research projects. We collaborate with colleagues from around the world, all in the hopes of one day discovering a cure for these debilitating illnesses.

Our expert team is solely dedicated to helping children and adolescents, along with their families achieve the best quality of life possible. We work closely with Cleveland Clinic’s renowned neuro-ophthalmologists, rehabilitation specialists, rheumatologists, immunologists, neuropsychologists and neuroradiologists to create a monitoring and treatment plan tailored specifically to each child’s personal and disease-specific needs. In addition to pediatric multiple sclerosis, we treat a wide array of other pediatric neuroinflammatory disorders such as acute disseminated encephalomyelitis (ADEM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorders (NMOSD), optic neuritis (ON), transverse myelitis (TM) and autoimmune encephalitis (AIE).

In the true spirit of collaboration, we can bring in experts from other Cleveland Clinic centers, such as Epilepsy and Movement Disorders for our autoimmune encephalitis patients, to address all aspects of a child’s disease. We understand how challenging each and every symptom can be to both patients and their family members and strive to prioritize well-being. In this way, we continue to work together to help our children achieve their full potential across all aspects of daily life, whether it be academically, socially, emotionally, physically, or professionally.

For more information and to schedule an appointment at the Cleveland Clinic Pediatric MS and Neuroimmunology Center, please click here.

NMOSD Awareness Around the Globe

March is Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness month, and we have been sharing stories from our community and raising awareness all month long. Learn more about NMOSD on our website, find out five things you can do to raise awareness, or read one person’s experience in their own words on our blog.

March Events

We are excited to have held our second virtual storytelling event in partnership with Horizon Therapeutics on Tuesday, March 8. Watch the video to hear unstoppable stories from care partners and individuals living with NMOSD as part of the “NMOSD Won’t Stop Me” campaign. We are proud to have partnered with the leading NMOSD community organizations for this event, including The Guthy-Jackson Charitable Foundation and The Sumaira Foundation for NMO. These stories were developed in a virtual workshop with MothWorks at The Moth. The Moth is a nonprofit organization dedicated to honoring the diversity and commonality of human experience through the art of true, personal storytelling.

Earlier this month, The Guthy-Jackson Charitable Foundation gathered neurologists, other experts, and NMOSD patients together for a special virtual event: International NMO Patient Day. The webinar covered hot topics and breakthrough progress on NMOSD, including sessions on understanding NMOSD, understanding therapy, highlights of research, and more.

NMOSD In Europe

The European Alliance for Patient Access released a White Paper on Unmet Needs in Neuromyelitis Optica Spectrum Disorder in Europe. The paper included insights on the barriers and opportunities that over 10,000 NMOSD patients face as they take steps to accessing and taking control of their care in Europe. The top five needs included: lack of awareness, shortage of specialists, outdated treatment guidelines, inequitable access to innovative treatments, and inadequate support for caregivers. The report is available in English, Dutch, French, German, Italian, Spanish, and Swedish.

There is also a survey that aims to better understand the experiences of those living with NMOSD, and those who offer care to someone with NMOSD, in Europe. The survey asks about the pathway to diagnosis and ongoing care, the physical and emotional impact of the condition, and the resources currently available. You may complete the survey in German, Spanish, French, Italian, or English between now and 31 March 2022. Please note that this survey is not being administered by SRNA.

Share Your Story

We want to hear from you. Whether you want to share a few words or an entire essay, we invite you to share your story to help raise awareness. How has being a part of a rare disorder community impacted you? Whether you or your loved one has NMOSD or another rare neuroimmune diagnosis, we encourage you to share your experience in SRNA’s Community Stories survey.

The “NMOSD Won’t Stop Me” campaign with Horizon Therapeutics continues with another opportunity for those living with NMOSD and their loved ones to submit stories about their disease journey. As part of this effort, Christine Ha, the first blind contestant on MasterChef and winner of the show’s third season is sharing her NMOSD story and hopes to hear yours. Learn more and get involved at NMOSDWontStopMe.com.

New Documentary to Focus on AFM Children and Families

In the western suburbs of Chicago, Sarah Potter and her team of fellow filmmakers are working towards completing a documentary film her late husband Scott began filming in late 2019 about Acute Flaccid Myelitis (AFM). This film was incredibly important to Scott. He knew it would be an uphill battle to get the film funded, but that didn’t stop him from working on that process from the beginning.

Scott unexpectedly passed away in July of 2020. His wife Sarah, then a speech pathologist, couldn’t help but think about Scott’s film projects. She knew the AFM documentary was one he would have wanted finished above all others. With the encouragement and support of the filmmaker community, Sarah took the reins of finishing the film by picking up where Scott left off. She immersed herself in networking, research and learning about how documentary films are made.

As Sarah continued to explore the nature of what the film would be about, she realized there were parallels of the experience of losing someone incredibly close to you and a rare disease diagnosis. Both of these events involve an initial acute phase that has to be survived, but oftentimes the aftermath of it is where the long journey begins. The film explores the arc of emotion and levels of acceptance that individuals diagnosed with AFM and their families go through as they grapple with this diagnosis, while following Sarah as she explores her own self-discovery after her tragic loss.

The outcome of the film has many potential goals. It is critical the story of AFM be documented in 2022, a potential AFM outbreak year. It is important to garner the attention from the medical community, like pediatricians and emergency room doctors, to bring awareness of this rare disease, in order to properly diagnose patients with aligning symptoms. The intensity of caregiving and advocacy that is needed on the part of families can be all-consuming, especially for those with a rare disease. The lack of widespread knowledge, standards and support in medicine forces caregivers to be the experts, all while they are juggling parenting during a traumatic event. While this process is incredibly difficult, it can bring a perspective to life that many may miss.

The film crew is launching a Kickstarter campaign from February 15th – March 18th to raise funds to begin production, so the film can be made with the quality that will attract the largest audience. If you’d like to contribute and follow the progress of the campaign, visit www.whenthelotusblooms.com.

The filmmakers would love to hear your story or anything else you want to contact them about. You can email [email protected] for more information. To tag along on their filmmaking journey, follow @LotusBloomsFilm on Twitter and @whenthelotusblooms on Facebook and Instagram. There, you can read and share stories from families, get updates on production and more. The filmmakers are so grateful and honored to be an ally for the SRNA community.

Happy Holidays from SRNA!

Many of us are ready to put this challenging year behind us. Despite the uncertainty the COVID-19 pandemic has caused, we want to highlight the hope and resilience this year has shown us and the progress we have made. We successfully transitioned our programs to a virtual space, like our three-day 2021 Rare Neuroimmune Disorders Symposium, and our support group leaders have offered online support group meetings for participants around the world. We know so much more about COVID-19, its impact on our community, we now have safe and effective vaccines, and new treatments are being studied and approved. As we move into a new year, we at SRNA renew our commitment to connect you to education, resources, and timely support — especially during these demanding times.

Our work wouldn’t be possible without the generous support of our community members and donors. We are incredibly grateful to be part of such a caring family. Thank you. We could not have done this without you.

However you are celebrating this year, we wish you peaceful, happy, and safe Holidays. We look forward to a time when our community can meet in person again.

When the calendar turns to 2022, challenges will remain — but we will seize them as opportunities to continue improving and shaping a better world for all those affected by rare neuroimmune disorders. Together.

With love and gratitude,

— your SRNA family

This Holiday Season, give Hope

GIVE NOW

There are extra tax advantages available for charitable giving before year-end.

  • For those based in the United States, here’s how the CARES Act impacts charitable contributions made in 2021:
  • Taxpayers who don’t itemize deductions may take a charitable deduction of up to $300 ($600 for joint filers) for cash contributions made in 2021 to qualifying charitable organizations.
  • Limits on charitable deductions for itemized filers have been temporarily suspended for 2021 cash contributions.
    For more information about these changes, go to IRS.gov or contact your tax advisor.

Announcing the 15 Days to 15K Challenge!

We at SRNA would like to extend our sincere thanks to all of our members and SRNA Giving Tuesday ambassadors who donated, gave their time, and showed their support for our community this year. Everything you did made a difference!

Our Giving Tuesday Campaign took place on November 30, and we were very fortunate to have a matching campaign this year. We would like to express our sincere gratitude to our community members, Bob and Linda Malecky, for their generous matching donation. Thanks to our community, we are now over halfway towards our year-end goal of $200,000.

As part of our commitment to supporting our community and advancing research for rare neuroimmune disorders, we are excited to announce our “15 Days to 15K” challenge! The Siegel Family has generously committed to matching every dollar donated up to $15,000 from now until the end of December. All donations will go toward the Pauline H. Siegel Eclipse Fund for Research, and will help fund our James T. Lubin Fellowship.

It is imperative to us that we continue our investment in research, our education initiatives, programs that connect our community, and activities that allow people with ADEM, AFM, MOGAD, NMOSD, ON, and TM to have the best quality of life possible. We hope you will join us in making the future brighter for those with rare neuroimmune disorders!

Donate

Introducing the Transverse Myelitis Clinic at Northwestern Memorial Hospital

SRNA interviewed Dr. Elena Grebenciucova about the new Transverse Myelitis Clinic at Northwestern Memorial Hospital.

Dr. Grebenciucova completed a Bachelor’s degree in Biological Sciences and continued onto medical school while living in North Carolina. During medical school, Dr. Grebenciucova became interested in autoimmunity and the central nervous system and chose to proceed with a residency in neurology at the University of Chicago. During her residency, she was heavily involved in the care of patients with multiple sclerosis and rheumatological disorders affecting the central nervous system. It is there that she developed a focused dedication to the care of patients with multiple sclerosis and other rare autoimmune disorders, including autoimmune encephalitis. She then completed her fellowship in multiple sclerosis and transverse myelitis through SRNA’s James T. Lubin Fellowship at the University of Pennsylvania and soon thereafter relocated back to Chicago to join the MS group at Northwestern University Feinberg School of Medicine.

Dr. Grebenciucova’s research interests include safety of disease-modifying therapies in patients who are older, the concept of immunosenescence and how it affects treatment responses, and outcomes across the spectrum of autoimmune disorders. She has an additional interest in neurologic complications of HIV and the interface of HIV infection and autoimmunity.

Read more below to learn about this Center!

What is the Transverse Myelitis Clinic at Northwestern Memorial Hospital, and what types of services can patients receive at your clinic?

 The transverse myelitis clinic is our attempt to provide the most comprehensive standard of care possible to our patients diagnosed with transverse myelitis and other rare neuroimmune disorders. We are a team of experts in different fields, ranging from neuroimmunology, neurologic infections, neurosurgery, neurourology, pain management, spasticity management, physical therapy, sleep medicine, and neuropsychiatrists who understand some of the emotional issues that people with transverse myelitis can experience. By comprehensively providing the best standard of care in those areas, we try to have the most impact on the lives of those people who live with transverse myelitis and other rare autoimmune conditions.

What makes the Transverse Myelitis Clinic at Northwestern Memorial Hospital unique in the world of rare neuroimmune disorders? 

 A lot of times when you are a patient with transverse myelitis, you come to see a neurologist with symptoms of bladder urgency, spasticity, chronic pain, trouble with sleep, or sexual dysfunction. Sometimes a general neurologist will manage all of the above successfully, but sometimes they aren’t able to because the situation may be a little bit more complex and requires a higher level of expertise. Then, in those situations, people are being referred and sent out to another provider, and there’s potentially a disconnect between that neurologist and the other providers. In an ideal world, they would read each other’s notes or somehow communicate, but in the real world, it doesn’t always happen that way. The patient’s care may therefore then become disconnected. At Northwestern, because we are a team, we communicate with each other to try to avoid this disconnect.

For example, if I have seen a patient with transverse myelitis and I referred them to neurosurgery for an evaluation of spinal cord stimulator for pain management or to one of our physical therapists, these providers are going to communicate back to me, and I’m going to be able to ask them questions and provide some feedback. This allows an actual discussion of the patient and their issues instead of a disconnect between providers. Our hope is that this provides better results for patients because all their providers are connected and on the same page.

What does the future of the Transverse Myelitis Clinic at Northwestern Memorial Hospital look like? Are there services or additions you would like to make in the next few years? 

 I am currently looking into pursuing some of the more integrative approaches to medicine. For example, looking at diet and how it may impact fatigue, cognition, pain, and spasticity. In the future, I would like to have a dietologist on our team. I would also like to bring more clinical trials to our clinic that potentially can be helpful to people with rare neuroimmune disorders.


Are you currently doing research? If not, what type of research most interests you in the world of rare neuroimmune disorders? 

 We are currently starting some MOG antibody disease clinical trials and also conducting research looking at the outcomes of people with neuromyelitis optica spectrum disorder.


What would be the best way for someone reading this to contact your clinic and schedule an appointment? 

If you go to the Northwestern University Transverse Myelitis Clinic page (https://www.nm.org/conditions-and-care-areas/neurosciences/transverse-myelitis-clinic-at-northwestern-memorial-hospital), it will allow you to see how to contact me. The address and phone number are also listed below.

Address: 259 East Erie Street, 19th Floor, Chicago, Illinois 60611

Phone number: 312-695-795.

Happy Thanksgiving from SRNA!

On this Thanksgiving day, we want to take a moment to thank you for making SRNA a part of your life. We’re honored to be part of such a caring community – trusting us to support you and your loved ones during and after a rare neuroimmune diagnosis. Please take time to connect with your family members and friends during this season of thanks.

We are also incredibly thankful for our community members, Linda and Bob Malecky, who have generously decided to match every dollar raised up to $50,000 this #GivingTuesday towards the funding of our next research fellow.

Please join us on November 30 and make a difference for our community and the future of research. Every gift, whether you donate $5 or $500, helps.

Become an SRNA Giving Tuesday Ambassador

Giving Tuesday is around the corner, and we at SRNA are preparing for this wonderful day of community, thoughtfulness, and giving. This year, we are asking for your help to make this the best Giving Tuesday yet. Why? Because we would not be able to accomplish the important work we do without the generosity and support of our community. By spreading the word about Giving Tuesday, you can help amplify our message and contribute to the mission of SRNA: to advocate for those with rare neuroimmune disorders. If you would like to become an SRNA Giving Tuesday Ambassador, keep reading below.

What is Giving Tuesday?

Giving Tuesday is a national campaign occurring on the Tuesday following Thanksgiving, Black Friday, and Cyber Monday. It was established as a way to begin the giving season and encourage people to contribute charitable donations to nonprofits. This year Giving Tuesday is on Nov 30, 2021.

What is an SRNA Giving Tuesday Ambassador?

SRNA Giving Tuesday Ambassadors are short-term volunteers who help us get the word out via social media. Leading up to and on Giving Tuesday (November 30, 2021), you will amplify our message and share your own perspective about rare neuroimmune conditions.

How can I help get the word out?

You can share posts directly from our Facebook, Instagram, and Twitter accounts, or use some of the sample texts included in the toolkit to create your own!

Have a look at the toolkit we put together with assets and copy you can use.

The toolkit includes:

  1. Assets: You can use the provided images for your social media posts leading up to and on #GivingTuesday
  2. Copy: These are sample captions that you can use when spreading the news. Use these examples or write your own!
  3. Unselfie: Download the #UNSelfie template to publicly announce your support of SRNA on Giving Tuesday. Simply write in why you are supporting SRNA on November 30, take a picture with the sign, and then post it to social media tagging SRNA on Facebook, Instagram, and Twitter @wearesrna

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