President’s Column

Written on 11/13/21

President’s Column

I hope you are all staying safe and well. We are excited to share our digital Magazine that highlights some of the work SRNA has done in 2021. As 2021 is coming to a close, it is a time to reflect on the past and think about what the future holds. The pandemic has remained an underlying theme that influences all our lives. While it is a challenge to adapt to such a stressful situation, particularly in our community where so many people are medically vulnerable and with such complicated conditions, it is a remarkable fact that humans are incredibly adaptable. We somehow find a way to move forward.

SRNA has worked hard to adapt, and it has been a busy and productive 2021. We’ve redesigned our support group meetings to the virtual world and recently held our second virtual Rare Neuroimmune Disorders Symposium. The presentations were exceptional. If you didn’t have the opportunity to attend, all the session recordings are available on our website. Since the start of the pandemic, we have produced an informative interview series with Dr. Benjamin Greenberg at The University of Texas Southwestern discussing issues surrounding the pandemic and COVID-19 vaccines. These videos have been viewed over 18,700 times by our community members. The series offers critical information that many in our community have relied upon in making the very personal decision to get vaccinated. I implore you to watch this series on our website. We initiated a study this year to better understand the impact of the pandemic on our community. We are currently analyzing the data and will make the results available to you when the analysis is completed.

We’ve focused considerable effort in raising awareness about all these rare disorders throughout the year, including creating awareness campaigns for TM and AFM in June and July, respectively. We’ve updated all the disorder information sheets on our website to make them accessible and present the most current information.

We know that having a rare disorder can be an isolating experience and how positive and powerful it can be to read about others who share similar experiences. The importance of this empathy was the basis for our Hope Ambassador project that was launched in 2017. We’ve continued this effort by launching the “This is Me” Campaign, and we encourage you to get involved and share your story.

To have hope for the future, we must learn more about all these disorders. What is the disease process? How do we more rapidly diagnose with more precision? Can we determine a cause? What is the most effective way to treat them acutely to minimize damage to the central nervous system? What are the most effective symptom management practices? Is it possible to find a cure? Is it possible to repair the damage to the central nervous system? We all have these questions, and the answers depend on our ability to fund the research. Over the past 27 years, we’ve learned that if we rely on other institutions to fund this work, it will take too long to arrive at these critical answers.

If we want this work done, we will have to raise the money to fund it. We face the same issues in the training of specialists to offer the best clinical care to the people in our community and conduct this research. That was the impetus behind our announcing the James T. Lubin Fellowship Program in 2008. We funded our first Fellow, Dr. Allen DeSena, in 2012, and have funded seven Fellows over the past nine years. If we want to grow our discipline, we need to raise funds to get clinicians and researchers trained in rare neuroimmune disorders.

We’ve made progress in advancing research and growing our discipline, but as you are all so acutely aware, it hasn’t been nearly enough. There is so much work left to do, and we’re going to need your help to make it happen. This year, SRNA has set a goal to raise $200,000 to support our efforts to train clinician-researchers through our Fellowship Program and further our research efforts. As part of their two-year training, each Fellow conducts a research project on these disorders.

None of this work gets done without your help. We are so grateful to all who have generously supported us over the years and continue to do so. Thank you. When the SRNA Board established the Pauline H. Siegel Eclipse Fund for research, it represented the importance Pauline placed on the efforts to understand and treat these disorders. Pauline had such great hope for her future and for the futures of the people she came to care for and love in our community. For Pauline and all of you, hope for a positive future comes from this research.

I hope you enjoy reading about some of our 2021 highlights. I hope it is a good holiday season for all of you, and all of us at SRNA wish you a good new year filled with good health, happiness, and peace.

Sandy Siegel