Register Now for the 2017 Rare Neuroimmune Disorders Symposium!

We are two weeks away from our 2017 Rare Neuroimmune Disorders Symposium! This education and advocacy conference is for families, caregivers, and individuals diagnosed with ADEM, AFM, NMOSD, ON, and TM who want to learn about the latest research, diagnosis, and treatment of these disorders. The event presents a unique opportunity for community members to meet others and discuss shared experiences. The conference also allows participants to network with the leading medical experts in the field of rare neuroimmune disorders.

This year, the RNDS is being held in Columbus, Ohio on October 20th – 21st. We already have over 150 attendees registered, and would love to see you there as well! Included in the registration is two days packed with workshops and information sessions led by our medical experts and researchers. Participants also have the opportunity to participate in several research studies currently being conducted on rare neuroimmune disorders. Breakfast and lunch are provided both days, as well as a dinner reception on Friday night of the conference. Some topics that will be discussed include “Rehabilitation”, “Managing Fatigue in RNDs”, “Transition from Adolescents to young adults”, disorder-specific breakout sessions, and many more. To see the full list of topics and the agenda, please visit the RNDS event page.

Online registration for the RNDS closes Monday, October 9th, so make sure to register ASAP if you are planning to attend! On-site registration on the day of the event is available, but you will not be guaranteed a spot in your preferred workshop if space does not permit. Also, please be sure to indicate whether you will attend the Ohio Walk-Run-N-Roll, which is being held Sunday, October 22nd in Dublin, OH.

SRNA is excited to share the 2017 RNDS with our community and hopes to provide a meaningful and beneficial experience to all who attend. For those unable to attend, all talks will be video-recorded and made available in the Symposium Videos section of our Resource Library following the conference. If you have any questions about the 2017 RNDS or Ohio Walk-Run-N-Roll, please email [email protected]. We hope to see you in Columbus soon!

Raising Awareness

Tom Ponzo, a student at Connecticut School of Broadcasting in Tampa, Florida, recently created a public service announcement (PSA) about transverse myelitis, featuring his friend Kristin Smith. PSAs aim to bring awareness to issues, and Tom decided to create one about transverse myelitis.

Kristin, who is featured in the PSA, began losing sensation in both legs on December 20, 2012, and in a few hours, she was paralyzed from the chest down. Three months after Kristin lost the ability to walk, she was diagnosed with transverse myelitis. Still requiring the use of her wheelchair, she was determined not to give up her dreams. Kristin has since completed her Master’s and PhD in Atmospheric Science at the University of Maryland and now works at the National Aeronautics and Space Administration in Florida. You may recognize Kristin as one of our Myelife. My hope. Hope Ambassadors from last year. You can find her story here.

Kristin will also be a speaker for our September podcast, “How to get the most out of your appointments: Physician and patient perspectives with Dr. Greenberg and Kristin Smith.” Kristin and Dr. Greenberg will be discussing the medical appointment from each of their perspectives and give tips and suggestions for how to get the most out of an appointment. This podcast will be on September 25th between 1 and 2 pm ET. To learn more and to register, click here.

A big thank you Kristin and Tom for their willingness to spread awareness!

Announcing the 2017 Rare Neuroimmune Disorders Symposium

Being diagnosed with a rare disorder like transverse myelitis can be isolating. Most people who are diagnosed with ADEM, NMOSD, ON, or TM have never heard of these conditions before being diagnosed, and all too often the medical professionals treating them have only treated a few patients with the same disorder. This can make it hard to manage the symptoms of these disorders, and it can be especially difficult when you don’t have anyone around you who is experiencing similar issues.

Every other year SRNA hosts an international Rare Neuroimmune Disorders Symposium (RNDS), an event in which individuals with ADEM, NMOSD, ON, and TM, their families, and the leading medical professionals and researchers come together to discuss the diagnosis, management of symptoms, and latest research on these disorders. It is a wonderful opportunity to learn about these disorders and interact with others dealing with similar symptoms and issues. We encourage anyone who can to attend the 2017 RNDS being held in Columbus, OH on October 20-21. Registration is now open!

Even if you can’t attend, all talks given at the Symposium will be video recorded and made available in our resource library and on our YouTube channel. We have dozens of talks from past symposia available as well. The most viewed video from the 2015 RNDS in Dallas, TX, “Advances in Neuro-Rehabilitation,” discusses the latest knowledge about rehabilitation after a rare neuroimmune disorder diagnosis, with a focus on activity-based restorative therapy and functional electrical stimulation (FES). The speaker, Dr. Becker, discusses how the spinal cord has endogenous stem cells, or stem cells that are already in the spinal cord, and how FES may be used to help these stem cells know where to repair damage. Dr. Becker will be giving an update on neurorehabilitation at the 2017 RNDS. Be sure to watch this video and others from past symposia, and we hope to see you in Columbus in October!

Rare Disease Day 2017

Today marks the 10th annual Rare Disease Day, which takes place on the last day of February. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s global theme is research.

Here at The Siegel Rare Neuroimmune Association (SRNA), we are dedicated and focused on facilitating research to advance knowledge about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM).

SRNA supports the efforts of researchers studying rare neuroimmune disorders by providing grant funding for research studies, supporting the training of clinician-scientists through our James T. Lubin Fellowship, and conducting SRNA-led research studies. Through these channels, significant research is being done to better understand these rare neuroimmune disorders and develop improved acute therapies and symptom management strategies.

Our work is made possible through the generous support of our community, foundations, and corporations who believe in our goal to improve the quality of life of individuals living with rare neuroimmune disorders. By choosing to donate today in honor of Rare Disease Day, you are actively helping to advance research, enhance clinical care, raise awareness and advocate for rare neuroimmune disorders.

To learn more about the clinical studies and trials underway, please visit: https://wearesrna.org/shaping-the-future/research/clinical-studies-trials

Georgia Rare Disease Day

The momentum for Rare Disease Day has begun! Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The Georgia SRNA members gathered on Friday, February 17th, at the Georgia State Capital to educate about and advocate for individuals living with rare neuroimmune disorders. Six people living with transverse myelitis attended this special event, along with their family members and friends. The event featured three speakers who each gave their perspective on the importance of advocating for rare neuroimmune disorders.

The first speaker was Rare Disease Day co-coordinator and SRNA support group leader, Kim Harrison. She told the crowd “It is our hopes and dreams that more funding will help find a cure for transverse myelitis and other rare neurological diseases.”

Butch Brosman, diagnosed with TM when he was six months old, spoke next on the importance of disability rights: “I am thankful to be here today to share my story and I hope it may help others get involved with the notion of disability rights.”

The third speaker, Mathew Hardy, shared his heartfelt experience of caretaking for his dear friend with TM before she passed away: “I am here today as a caretaker and a child’s perspective. What most people don’t understand is that living with someone with a disability is a calling.”

The day concluded with passing out pamphlets and answering questions about rare neuroimmune disorders.

On behalf of us all at SRNA, we extend our gratitude to everyone who helped make this event possible, with special thanks to Kim Harrison, Beth Nguyen, and Jodi Arminio for all of their planning and hard work. Well done, Georgia!

Reflections from The 2016 Regional Rare Neuroimmune Disorders Symposium

About 75 individuals gathered together at the University of Colorado for a day of education and networking at the 2016 Regional Rare Neuroimmune Disorders Symposium in Aurora, CO on August 132016. The goal of this conference hosted by The Siegel Rare Neuroimmune Association (SRNA) and The University of Colorado, Denver was to provide an opportunity to bring together the community of individuals diagnosed with TM, AFM, NMOSD and ADEM, their families, caregivers, and medical professionals interested in these disorders to exchange information regarding diagnosis, research and treatment strategies. The diverse audience provided insight and perspective on the many facets of rare neuroimmune disorders and how they can impact quality of life.  For some attendees, this was the first time they had met others with a similar diagnosis and also met medical professionals interested in these disorders!

Dr. Teri Schreiner opened the symposium with an overview of Acute Flaccid Myelitis (AFM) and Acute Disseminated Encephalomyelitis (ADEM), followed by a discussion on NMOSD and TM by Dr. Jeffrey Bennett. This led the attendees into an informative diagnosis and treatment discussion panel on rare neuroimmune disorders.  Dr. Sara Qureshi, who completed her neuro-immunology Fellowship at University of Texas Southwestern and is currently at the Billings Clinic in Montana, joined us to provide an understanding of the symptoms after a non-traumatic spinal cord injury. Janet Dean, nurse practitioner from Kennedy Krieger shared the importance and role of rehabilitation in rare neuroimmune disorders.

After lunch, Anastacia Wall, PA-C, shared about managing fatigue, Dr. Augusto Miravalle provided some great insights on management of neuropathic pain and Dr. Schofield discussed autonomic loss of function. The participants had a lot of questions and contributed to an active discussion during the panels. The symposium closed with an overview of the research being conducted at the University of Colorado Medical School led by Dr. Timothy Vollmer followed by a question and answer session.

189470ca-3712-46c8-8787-a9d9437ca748Putting together a symposium of this kind takes a team effort and we are extremely grateful to Dr. Schreiner, Alina Rich, Alexander Stein at University of Colorado, our members and the medical professionals who donated their time to help individuals gain a better understanding of these disorders. One member, Lois Helvie, who attended the symposium captured the importance and spirit of this day nicely:

“I recently attended the Rare Neuroimmune Disorders Symposium, held in Denver last week.  I have wanted to attend a symposium for many years, and this year it was in my hometown.  I’m so glad it was!

I was diagnosed with Transverse Myelitis in 2000.  At the time, it appeared that I had a complete recovery.  Now, after 16 years, I am finding that in spite of a “complete” recovery, I am now having issues that I believe have developed because of my TM. This symposium was one of the best things that could have happened for me.  I was able to ask questions of practitioners who spend their time studying TM and other rare neuroimmune disorders.  Every one of their presentations answered questions I have had for 16 years.  While I love my neurologist, he admitted he had only seen 4 cases of TM in his long years of practice, so being with physicians who had the answers, plus meeting others was just an incredible experience for me, and gave me confidence and hope that I can reverse or at least manage the issues I am now experiencing. If you have TM, ADEM, NMO, or any of these rare disorders, please try to attend next year’s symposium in Baltimore.  You will be so glad you did!”


send_a_kid_to_camp

A Chance To Give Back

Dear SRNA Families,

In July of 2010 our daughter was diagnosed with neuromyelitis optica spectrum disorder. Since 2008, she has experienced several attacks of the disease and it affected her spinal cord, brain, and vision. The Siegel Rare Neuroimmune Association graciously took our daughter with NMO under their wing. SRNA hosts a family camp every summer for children that have been diagnosed with TM, NMOSD, ADEM, ON, and AFM. We have attended camp for the last 3 years. Our family loves SRNA camp! Our daughter has had the rare opportunity to meet kids who have similar experiences and diseases, and we have had the chance to meet supportive parents and knowledgeable doctors.

Because SRNA has helped us, we have been looking for a chance to give back. On June 22, 2016 our family hosted a SRNA night at our local Chick-Fil-A. Many restaurants have fundraising opportunities and will give a portion of their proceeds to charities. We chose Chick-Fil-A because they donated a percentage of the evening’s profit, and customers did not have to say they were there for SRNA night. We also asked a local vacation rental business if they would donate anything to be silent auctioned for SRNA. They donated a 2 night stay in a condo. In total we raised $308 for The Siegel Rare Neuroimmune Association. This isn’t a huge amount of money but the thought occurred to me that if several of the families who have been helped by SRNA had their own SRNA fundraisers, collectively we could raise a large amount of money.

With your involvement, we can turn a small donation into a huge one. If you are looking for ways to give back to SRNA, the restaurant fundraiser was a great option and was very easy to do.

For those who are thinking about it, here’s what we did!

  • We went in person to our local Chick-Fil-A and asked to speak with the manager.
  • We introduced ourselves and our child and asked if we could do a fundraiser night for our charity. We told them a little about The Siegel Rare Neuroimmune Association and about our daughter.
  • Our Chick-Fil-A gave us a few dates to choose from and we chose an evening that worked best for us.
  • We contacted SRNA and let them know about our fundraiser date, and they posted on SRNA website and on Facebook.
  • We made a small poster (8×10 inches) in Microsoft Word inviting people to attend our fundraiser. We included the date, time, and a little info about The Siegel Rare Neuroimmune Association and how NMO has affected our child.
  • We brought the poster to Chick-Fil-A a week before the event. Chick-Fil-A displayed it on their bulletin board.
  • We advertised the event on our own Facebook pages and invited friends and family.
  • On the day of the fundraiser, we brought SRNA brochures and donation envelopes with us to the restaurant. Our Chick-Fil-A set up a small table by the entrance and we placed all of SRNA items on it along with another copy of our poster.
  • Our fundraiser was from 5-8pm. We enjoyed eating with friends and family that attended!
  • The day after the fundraiser, I called Chick-Fil-A and asked them what the total amount donated would be and if they would be sending the check directly to SRNA. I made sure that I left a donation envelope from SRNA for them to put the check into. The tax ID# for SRNA is EIN 91-1780467 and it is a 501(c)(3) organization. All of this information is also available on SRNA website.
  • After getting the total donation amount, I sent an email to SRNA and let them know to expect a donation.

And that’s it! Happy fundraising!!

Eric & Brooke Thomas

2016 Regional Rare Neuroimmune Disorders Symposium – Register Today

We are less than month away from the 2016 Regional Rare Neuroimmune Disorders Symposium. This conference is open to all individuals diagnosed with AFM, TM, NMOSD, ON or ADEM, their families and caregivers. Medical professionals interested in these diseases are also welcome to attend.

Conference Objectives:

  1. Acquire an understanding of rare neuroimmune disorders (TM, NMOSD, AFM, ADEM and ON) and how they relate to each other
  2. Learn about the latest therapies and strategies to manage the symptoms associated with these chronic rare neuroimmune disorders, including clinical studies and future treatment strategies

Please join us!

University of Colorado Hospital
Anschutz Inpatient Pavilion 2
Bruce Schroffel Conference Center
12605 E 16th Avenue
Aurora, CO 80045

Registration Fee: $15

Ask The Expert Podcast Series – Back-to-School Preparation for Students with Demyelinating Diseases

Do you have questions about school-related issues for students with disabilities as you plan ahead for the new school year? What services are available for students with disabilities in K-12 or even in college? How can one manage the neuropsychological manifestations of TM, NMO and ADEM and succeed in school? What are some of the federal laws and state laws that one should be aware of? Do you have questions for our experts?

Join SRNA’s “Ask the Expert” Podcast Series

On

Back-to-School Preparation for Students with Demyelinating Diseases: Legal and Neuropsychological Perspectives

With

Lana Harder, PhD, ABPP | University of Texas Southwestern | Children’s Medical Center Dallas

&

Susan Schoppa, JD | Medical-Legal Partnership for Children | Dallas Legal Aid of NorthWest Texas | University of Texas Southwestern

 

On July 12, 2016 at 12 pm Eastern Time

2016 Regional Rare Neuroimmune Disorders Symposium

An education and advocacy conference for families, caregivers and individuals diagnosed with Transverse Myelitis (including the subtype Acute Flaccid Myelitis), Neuromyelitis Optica Spectrum Disorder, Optic Neuritis and Acute Disseminated Encephalomyelitis

This conference hosted by The Siegel Rare Neuroimmune Association (SRNA) and The University of Colorado, Denver is dedicated to the exchange of information regarding diagnosis, research and treatment strategies and to providing an opportunity to bring together the community of individuals diagnosed with these rare neuroimmune diseases, families, caregivers and the medical professionals who have interest and are specializing in these disorders.

The symposium will begin at 8:00 am MDT on Saturday, August 13th 2016 and will be held at

University of Colorado Hospital
Anschutz Inpatient Pavilion 2
Bruce Schroffel Conference Center
12605 E 16th Avenue
Aurora, CO 80045

For more information about the symposium and to register, please click here.