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!

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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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