Inspiration on the National Mall

By Julie Lefelar

Tanisha Willis is a determined woman. She also has Neuromyelitis Optica (NMO) and Lupus. Don’t be fooled by the notion that she has two debilitating autoimmune disorders; she inspires us all. When she came to me and Cynthia Albright to organize a walk on the National Mall in Washington D.C., we both were a little hesitant. We were worried that we would not be able to pull it off. Little did we know that Tanisha knew better. It was a fabulous idea.

This past September, with the help of TMA, now SRNA, we got up very early in the morning and traveled to the beautiful and historic Constitution Gardens, surrounded by so many of our nation’s coveted landmarks. It was the perfect place to gather with our peers in this journey with rare neuroimmune disorders. We were blessed with a sunny, perfectly temperate day, a tranquil pond full of ducks and geese cutting through the glass-like water, dipping their bills rhythmically almost in unison, and the majestic Washington Monument rising above the trees to remind us that we were, in fact, in one of the most photographed areas in the U.S.  There was a wonderful turnout of people of all ages, some with their furry friends in tow, ready to use their voices and let everyone know that they stand up against the unwelcome visitor who has invaded their lives. With everyone happy and thankful for the medical professionals who help them live as normally as they can, the energy was remarkable.

Our morning started with some words of inspiration by Tanisha, then transitioned to Jeremy Bennett from SRNA who always provides us with the latest SRNA news and lets us know that what we do as volunteers is of immense importance. Our special guest speaker and favorite rock-star doctor, Dr. Michael Levy, who came all the way from Boston, gave a fantastic speech that let us know that the medical community is fighting very hard on our behalf. Then our musical guests, the Dream Team, gave the whole event a reggae vibe as we started our walk. Naturally, in her usual form, Tanisha recorded the walk on her phone as she experienced it live, streaming online for all to see with commentary that was equally fun. We had the promise of a big basket of cookies as motivation to show the best spirit and our guests did not disappoint. We had so much fun passing out door prizes as well and everyone, regardless of whether they won a prize, left much richer with new connections and friends, some from as far as Canada!

We can’t thank our sponsors enough: The MOG Project who sponsored our walk by holding a huge t-shirt drive, Tanisha’s church, The Miracle Center of Faith, Missionary Baptist Church, who reached deeply into their pockets to make sure this event was a huge success, as well as Merle Norman of Olney, Maryland for the fantastic door prizes. We had such great volunteers as well, and we thank the families and friends of the organizers, as well as those from SRNA who have supported us consistently. We walked away thinking that we can’t wait to do it again. It was indeed a good day.

Recap of the 2019 Rare Neuroimmune Disorders Symposium (RNDS)

On September 19-21, over 200 of our community members gathered in Columbus, Ohio, to participate in the 2019 Rare Neuroimmune Disorders Symposium (RNDS). Our biennial symposium is a pivotal program for the education and research of rare neuroimmune disorders. During this year’s event, we celebrated the Transverse Myelitis Association’s twenty-fifth anniversary and made an exciting announcement: we’re changing our name! After twenty-five years of growth and progress, SRNA is becoming the Siegel Rare Neuroimmune Association or SRNA.

SRNA President and Founder, Sandy Siegel, and SRNA Board Member, Dr. Benjamin Greenberg, began the conference with the name change announcement. They explained how SRNA is a better representation of the inclusivity and power of our organization. Dr. Greenberg remarked, “The Board, for the last seven years, has recognized that our name was outdated. The Siegel Rare Neuroimmune Association, as a title, did not represent who we were as an organization or who we were as a community… Together, as a community, we are stronger when we all live under one tent.” You can view Sandy and Dr. Greenberg’s talk here.

Following the name change announcement, members of our community who live with each of the rare neuroimmune disorders shared their stories and personal experiences with attendees. The panel provided insight into the different diagnoses, demonstrated the impact these disorders have on them and their families, and overall allowed event participants to connect and identify with others. You can view the member panel recording here.

Dr. Greenberg’s next presentation, “Stronger Together,” demonstrated how each of the rare neuroimmune disorders is connected and the benefit of studying them collectively. Sessions on the diagnosis and treatment of each of the rare neuroimmune disorders followed: transverse myelitis (TM), acute flaccid myelitis (AFM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), and acute disseminated encephalomyelitis (ADEM).

After a midday break, sessions continued on Recurrent vs. Monophasic Disorders, Vascular Myelopathies, Myelitis in Systemic Rheumatologic Conditions, and Updates from SRNA. We then heard from a panel of experts on The Future of NMOSD Therapeutics: What Have We Learned? Participants included Drs. Michael Levy and Benjamin Greenberg, two members of SRNA’s Medical and Scientific Council, as well as Dr. Ankur Bhambri of Alexion Pharmaceuticals and Dr. Eliezer Katz of Viela Bio. They discussed recent developments and new medications for the treatment of NMOSD. We ended the first day of the conference with workgroup sessions on Finding Medical Care in Your Area, IEPs and 504s, and ADA, Disability, and Benefits.

The second day of the conference began with talks on research. Dr. Cristina Sadowsky presented on Rehabilitation. We then heard about research on the upcoming stem cell trial to repair the spinal cord in patients with TM and a study investigating a genetic link in individuals with TM. Next, a panel consisting of medical researchers, a member of Centers for Disease Control and Prevention (CDC), and a member of the National Institute of Health (NIH) convened to discuss AFM and the urgent health need to address this growing concern. The panel spoke about their collaborative efforts to begin a multicenter, national research study on AFM with funding from NIH, as well as CDC’s efforts to better address this growing concern. You can view the recording here.

The second half of the day began with presentations on symptom management. Talks continued on Spasticity, Urological Issues, Fatigue, Cognitive Issues, and Pain, Numbness, and Tingling. We learned from Nadia Barakat, PhD, about new imaging techniques for the diagnosis and understanding of rare neuroimmune disorders, which you can view here. Maureen A. Mealy, PhD, RN, BSN, MSCN gave us an update on New Trends in Pain Management, and Anjali Forber-Pratt, PhD presented her research, “How is disability identity formed?” We then heard from a panel of medical experts on Pregnancy and Rare Neuroimmune Diagnoses, followed by a talk on Bowel Management Strategies by Janet Dean, MS, RN, CRRN, CRNP, CRND.

Finally, to close out the day, we heard from four of the James T. Lubin Fellows about their ongoing research and allowed for an open question-and-answer session, which you can view here. SRNA Board Member Dr. Carlos Pardo-Villamizar gave Closing Remarks and rounded out the end of the conference.

The 2019 RNDS was altogether an enriching and successful event. There was palpable energy surrounding the participants as a gathering this large of members of our rare disease community is powerful and unique. You can view the entirety of the talks from the 2019 RNDS in our Resource Library here. If you were unable to attend the event, please stay tuned for the announcement of our next symposium. We hope to see you there!

Gearing up for the 2019 RND Symposium!

SRNA’s 2019 Rare Neuroimmune Disorders Symposium (RNDS) is around the corner! Taking place September 19-21 in Columbus, OH, this conference will feature over 20 guest speakers and over 30 talks centered on the rare neuroimmune disorders. This is an event you do not want to miss!

One of the presentations will be on “Recurrent vs Monophasic Disorders,” featuring Dr. Sara Qureshi from Billing’s Clinic, MT. Dr. Qureshi will discuss how physicians determine if a person is experiencing a relapse and how rare neuroimmune disorders differ on this topic. There will also be a panel of experts discussing “The Future of NMOSD Therapeutics,” which will include representatives from the pharmaceutical companies who have developed new medications to reduce relapses in individuals with NMOSD.

Many of the talks will be given on the most current research in the field of rare neuroimmunology. Dr. Benjamin Greenberg of UT Southwestern Medical Center will give a presentation on the “Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells in Transverse Myelitis.” This will be an update on the status of this study, which is the first human clinical trial designed to study the safety and efficacy of implanting cells that produce myelin into the spinal cord in patients with TM. Another presentation will feature Dr. Cristina Sadowsky of Kennedy Krieger Institute, who will talk about “Rehabilitation and Rare Neuroimmune Disorders: Current Best Practices and Future Advances.”

Additionally, there will a variety of talks on symptom management in rare neuroimmune disorders. Dr. Jacqueline A. Nicholas of OhioHealth will give a presentation titled “What is Pain, Numbness, and Tingling?”. She will address best practices of pain management and how to differentiate various types of pain. Another talk will feature Dr. Allen DeSena of Carolinas HealthCare System Neurosciences Institute on the topic of fatigue, titled “Why Am I So Tired All the Time?”. Dr. DeSena will explain why rare neuroimmune disorders cause fatigue and what can be done to manage it.

These are only a few of the many presentations that will be given at the 2019 RNDS. To view a full list of speakers and presentations, you can view the agenda here.

Haven’t registered yet? Make sure to secure your spot at the RNDS by registering here.

Questions or concerns? Please contact us at info@wearesrna.org or call +1 (855) 380-3330.

We look forward to seeing you in Columbus!

– The Siegel Rare Neuroimmune Association

Announcing the 2019 SRNA 25th Anniversary Gala and Dinner Experience!

SRNA is gearing up for our 25th Anniversary Gala and Dinner Experience. Taking place on August 24th at the Kennedy Space Center Visitor Complex in Florida, the Gala will be an exciting evening for all who attend. Guests will enjoy a unique opportunity to celebrate the 50th Anniversary of the Apollo in the Saturn V room, while raising funds for rare neuroimmune disorders. 100% of the funds raised will go toward advancing research in the field of rare neuroimmune disorders.

This event will be the 4th Gala in SRNA’s history. Through the generous support and hard work of the event’s organizers, Jason and Tina Robbins, we have been able to raise over $80,000 in previous years. Jason and Tina’s daughter, Sarah, was diagnosed with Transverse Myelitis in 2011. Since that time, it became their mission “to find a cause and a cure for these devastating rare auto-immune neurological disorders.” Through this event, the Robbins family is helping us raise more funds for much-needed research for these rare disorders. We are thankful for Jason and Tina, who have dedicated their time to planning and hosting this successful event, and we are excited to share in this experience with all who attend.

The Gala will include raffles, Silent and Live auctions as well as musical entertainment. Guests will also have the chance to view real Apollo V artifacts and other amazing exhibits. We hope you will join us for an extraordinary evening in celebration of SRNA’s 25th Anniversary to help bring light and hope for the future. To learn more about the Gala and how to attend, please visit the event page here.

Small Town, Big Hearts

By Julie Lefelar

If you decide to take a trip through Southern Maryland down Route 210, also known as Indian Head Highway, you can’t help but realize that the further south you go, the more buildings, businesses and signs of the busy Washington DC Metropolitan area that you just came from seem to disappear. If you keep driving, you might just miss the town promised as the destination by its namesake road: Indian Head, Maryland. You would have expected traveling down that route that there would be an explosion of civilization upon your arrival. Instead, you will find a peaceful, unassuming main street, quaint neighborhoods, a beautiful community center called the Pavilion at the Village Green and the Naval Surface Warfare Center lining the Potomac River. It is in this center of town where, if you take a closer look, you will find unmatched generosity and community support. It is here where we experienced the big hearts of Indian Head in planning and holding our SRNA Walk-Run-N-Roll.

It all started when Cynthia Albright, a resident of Indian Head and a MOG Antibody-Associated disease patient of Dr. Michael Levy, ran into Curtis Smith, the Town Councilman. They started talking about her diagnosis of MOG-Ab disease and her involvement with the MOG Project at SRNA. He encouraged her to host a walk at the Village Green. As a co-founder of the MOG Project at SRNA, she contacted me and I was sold on the idea. We brought in Tanisha Willis, an NMOSD patient of Dr. Levy’s, who jumped at the chance to help.  Amy Ednie and Kristina Lefelar, Co-Founders of the MOG Project decided to make the commitment as well.  It wasn’t long before Indian Head Mayor Brandon Paulin got involved and the next thing we knew, the town of Indian Head had provided us with a beautiful venue at the Village Green and all the help we would need. Karen Williams, their event guru, pulled in volunteers and ideas for our event that would make it fun for all.

It didn’t stop with the town leaders. Cynthia was able to reach out to multiple businesses in the Indian Head area for support and with no second thought, they were all on board to support us. We got free services and donations for raffle items from many businesses interested in our cause and helping Cynthia. Dr. Levy once again demonstrated his generosity and commitment to the community by agreeing to speak at the event. Mayor Paulin and Councilman Smith stepped up to speak as well. It wasn’t long before we had a plan for a fun event which included inflatable carnival games, cotton candy, DJ Rockin’ Roger, face painting by Allison Ryan (a Disney face painting artist), an assortment of beautiful raffle and silent auction items like a hand-crocheted afghan by Cynthia’s husband Randy, a “MOGarita Basket”, a “Bark Basket” and two Mother’s Day baskets, among other items. We even planned on having MOG gear for sale, such as T-shirts designed by Allison Ryan and awareness ribbons. Members of the community and family members helped set up a bake sale, “MOGTail” drink station and concessions for the event. We did have a few hiccups along the way, but when an issue arose, Mayor Paulin scrambled to our rescue and, with the help of another local non-profit, the Indian Head Center for the Arts, all was well. Suddenly, we realized that this little town could make anything happen!

As we continued to plan, other Maryland businesses jumped in to help.  We were thankful to have had the support of our friends at Smoker’s Delight BBQ, Leverege (a rising technology company), Acker & Sons Plumbing, Gun Monkey’s, Firearms Training Incorporated, Blue Dyer Distillery, MoCo Founding Farmers, Target, JDaniels Psychotherapy Services, INC, the LaPlata Green Turtle, Chipotle, and White Plains Golf Course. We also had many other local businesses donate food, drinks and supplies, such as BJ’s, Costco, Giant, Safeway, Chick-Fil-A, Walmart and Texas Ribs & BBQ.  We can’t thank all of our sponsors enough for helping.  This event would not be possible without their support.  In addition, we had many volunteers who jumped in to make this a success and for that we are grateful.

On the day of the event, clouds loomed overhead, and we were afraid that our Walk would be rained out. We arrived early and diligently set up in preparation for the start of the event. As the time for the event arrived, suddenly the clouds parted and to our disbelief, the sun came out! What a miracle. People had a wonderful time dancing and playing games. When it was time for the speakers, Cynthia gave a heartfelt speech, telling her story and how supporting rare neuroimmune disorders is important. Mayor Paulin, Councilman Smith, and Dr. Levy all provided inspiring words.

Everyone had fun. Councilman Smith and Mayor Paulin gave life to the party. Everyone chipped in to help, whether to blow up balloons, help put up the welcome sign or excite the masses. Even the local high schools, Maurice J. McDonough, Loudoun County and Henry E. Lackey sent students eager and excited to volunteer.

While everyone had a great time, we saw the best zest for life from Team Victoria, a group of family and friends from New Jersey whose little girl Victoria had been diagnosed with AFM and is currently doing well. This family seemed to be celebrating her and at the same time showing their solidarity and commitment to keeping her and other children like her well.

When the event came to a close, clearly a success, we started packing up, satisfied that we had done our jobs. Just as the last box was packed in the car and the cleanup was finalized by the sound of a trunk closing, the rain started. And it really poured.

In retrospect, our hearts were full after this event. The incredible community support was overwhelming, and the town of Indian Head was the driving force for it all. We are thankful for this small town, who saw one of their own in need for a cure of a rare disease and decided to act, putting Indian Head on our map and in our hearts.

Tucson Walk-Run-N-Roll

By Barbara Sattler

“We need to have a walk in Tucson,” Julie says.

“You guys can do a walk,” Chitra says.

“No, no, no,” says my little voice.

Julie Barry and I met in 2009 and started a support group in Tucson, AZ. At times, we met every month and had 4 or 5 participants.

Times change. Some of our members moved and others weren’t able to devote time for a walk, so if there was a walk, Julie and I were the only two people in Tucson willing to plan it. To be fair, Julie was the only one willing. I’m retired, busy as I want to be, and as I grow older, I have less energy. Old age or TM, I can’t say for sure.

I had this horrible vision in my head of the walk being a complete flop – only a few people coming, spending more on planning than we took in. Because of the great weather, and caring Tucson community, it seems there are 3 to 4 walks or runs or bike events every weekend. AIDS, Multiple Sclerosis, Multiple Myeloma, Breast Cancer, Diabetes, Muscular Dystrophy, Parkinson’s disease, Alzheimer’s, and Melanoma to name a few. Nobody has ever heard of TM. Who would show up?

“We need to have a walk in Tucson. Phoenix had the first Arizona one last year and they’ll help.” Julie says.

“You guys can do a walk,” Chitra says.

“No, no, no,” says my little voice.

Julie and I met a couple times and talked about how, when, and where. She was enthusiastic and I pretended to be. Julie suggested the zoo. I love the Tucson zoo. It’s big enough to have lots of animals to see and small enough to get through it in about an hour and a half. It’s not full of bus traffic or extremely crowded. You can get a good view of the animals and the zoo is pro-conservation and involved in species survival programs.

We arranged to meet Meghan, a zoo employee who was assigned to help with our event and invited Gail Buch and Kate Krietor from Phoenix to join us. They planned the 2018 Phoenix Walk-Run-N-Roll, a tremendous success. Without them we never would have had a successful event.

The walk was planned for March 30, 2019 which turned out to be a beautiful spring day. In Tucson, it can be very hot, but it wasn’t. About 80 people had pre-registered from Tucson, Phoenix, Lake Havasu, Casa Grande, and Eager, Arizona; Modesto, California; and Chicago Illinois.

Julie, Gail, Kate, myself, and our friends and spouses met at 7:00 am at the zoo and got ready putting out food that had been donated, setting up a raffle table and t-shirt table, hanging up enlargements of SRNA members’ stories explaining how the various neuroimmune disorders SRNA supports impacted them. Every couple of minutes, we’d get an update that more people had shown up. (We believe the final count was 96.)

The event turned out to be a great success. We had inspiring speeches. Jordan, a young man with TM who was diagnosed incorrectly, and his mom, Kimberly, not only spoke about their situation but brought along about 30 Team Jordan folks. Craig, who had TM and was formerly a pilot, spoke. Ronnie, a mother of four, spoke about her journey with ADEM.

We took group pictures then had the official SRNA walk. The zoo turned out to be a great venue. After we completed our program, part of the ticket price allowed participants to remain at the zoo till closing.

We brought in $11,000 which was $10,500 more than I expected.

For me, one of the highlights was meeting Kelly from California who had TM for several years, but had never met anyone with TM before.

Julie and Chitra Krishnan, Executive Director of SRNA, were right. We could do a walk. Thanks again to Gail and Kate for their enthusiasm and hard work, Debbie Capen for SRNA pins, Jordan and Kimberly for speaking and Team Jordan for coming, and Jeremy Bennett, SRNA Community Partnerships Manager for all his help in planning and being part of the walk. Thanks to Julie for persuading me to do this, choosing the zoo, and making fabulous pumpkin bread.

If you have thoughts about doing a walk or other event, now is the time.

Barbara Sattler is on the Board of The Siegel Rare Neuroimmune Association. While a city court magistrate in Tucson, Arizona, Barbara contracted transverse myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement, she has written three novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on Amazon.com. Barbara also has a blog.

Announcing the 2019 Rare Neuroimmune Disorders Symposium!

Since our very beginnings in 1994, the Transverse Myelitis Association has made it our priority to increase education and understanding of rare neuroimmune disorders. Our first symposium took place in August 1999 in Seattle, Washington. It was the first gathering of clinicians, scientists, and people diagnosed with a rare neuroimmune disorder to discuss these disorders and share information. SRNA’s symposium has become a regular event, occurring every other year, that brings our community together and fosters the spread of the most up-to-date information about these disorders. It also allows our community to share stories and build connections.

SRNA is excited to announce that our 2019 Rare Neuroimmune Disorders Symposium (RNDS) will take place from September 19-21 in Columbus, OH. Attendees will meet at the Crowne Plaza in downtown Columbus to learn from experts about ADEM, AFM, MOG-Ab disease, NMOSD, ON, and TM. Presentations will include disorder-specific overviews, symptom management strategies, research updates, and more. Individuals who are diagnosed with a rare neuroimmune disorder will also be given the opportunity to meet and participate in community-building and support for one another. The symposium also offers attendees the opportunity to meet the medical experts in the field of rare neuroimmune disorders and to ask questions related to their disorder.

We encourage all our members, their family members, and medical professionals interested in learning about these disorders to attend. You can register for the 2019 RNDS here. If you have any questions, please email us at info@wearesrna.org. We can’t wait to see you in Columbus!

Alone Together

By Maria Cerio

Opportunities to meet someone to whom I can relate are few and far between. However, on Thursday, February 28, 2019, I found myself in a room of people like me. I was surrounded by people who know what it feels like to have your world rocked by a diagnosis of a rare disease.

Two weeks ago, I attended the Rare Disease Week events on Capitol Hill in Washington, DC. Programming kicked off with a screening of the documentary, My Turn. The film followed professional hockey player Scott Matzka’s journey with amyotrophic lateral sclerosis (ALS). Later in the week, I went to the young adults meetup and an art reception where all featured pieces were created by individuals diagnosed with a rare disease. The week culminated in Rare Disease Day at the National Institutes of Health, which consisted of panels, posters exhibits, a multimedia art exhibit, and networking.

There was no small talk here. The event attendees included a mix of patients, physicians, supportive family members and friends, students, and those simply trying to understand the life we live. With each introduction, I could sense a mutual hope of wanting the other to share the same diagnosis. For many, this is the one time a year they meet anyone with a rare disease and possibly even their own.

Looking around the room, it was clear that rare disease knows no race, sex, gender, size, or age. There were those whose disease is invisible, and others whose illness manifests itself in various ways, including disability – people from all walks and rolls of life. For once, I was in a space where the minority was the majority. In a room of individuals, many of whom experience chronic fatigue, the energy was palpable. It really is all one great paradox.

Show Your Rare: 10+1 Fundraising Ideas to Honor Rare Disease Day

Today is Rare Disease Day! How will you #ShowYourRare in solidarity with rare disease patients all over the world?

We’ve put together 10+1 ways to get involved and support SRNA’s 25th Anniversary this year. Check them out and get involved today!

Organize a 25-year Anniversary Walk-Run-N-Roll in your area

In 2018, there were five Walk-Run-N-Roll events organized by our members. This year we’d like to double that number. These events are a great way to raise awareness and funds, and to meet others. Last year, an average of 100 people registered for a Walk-Run-N-Roll. This year, we have our special 25-year branding ready to be showcased at your very own Walk-Run-N-Roll!

Host a restaurant fundraiser

As Barbara mentions in her blog post, hosting a restaurant fundraiser is a simpler way to get involved…and you don’t have to know someone who owns a restaurant. Groupraise is a great site that allows you to search by zip code for restaurants in your area that will give a percentage of sales to SRNA.

Ask a local business to donate a percentage of sales to SRNA

Speaking of local businesses…you don’t have to use a restaurant. Ask your yoga teacher, dry cleaner, or favorite retail shop to donate a portion of their sales on a certain day. Our friends at The Candle Lab in Pittsburgh, PA donated nearly $1000 last May as part of our Candles for a Cause event.

Organize a bake sale and a lemonade stand

From things that smell good to things that taste good: set up a bake sale at your work, church, or school. People are going to need a drink to wash down those delicious cookies. Do you have kids? Let them get involved and do an old-fashioned lemonade stand.

Set up a Casual Friday at work

No one likes wearing work clothes. Be the best friend of all your co-workers and plan a Casual Friday fundraiser. Each person who donates gets to dress down. TGIF indeed!

Create an online fundraiser

Two things that everyone has: Facebook and a birthday. Combine them and ask your friends to donate to SRNA in lieu of buying you a gift. These fundraisers are easy to do and make a big difference! Not a fan of Facebook? Or birthdays? Not to worry! You can always create a fundraiser through our website and share it with family and friends. Just as easy!

Get a pair

Donate $25 or more and we will give you a pair of the warmest, coolest, and most caring socks in town. Get your special pair of #caresocks now! This will not only make your feet look good, but also spread awareness about rare neuroimmune disorders!

Become a monthly supporter

Recognize this special 25-year anniversary of SRNA by making a commitment to make a monthly donation of $25 each month during the year. If you can afford $250 a month, that would get us even closer to helping us achieve our/your important goals. You will, of course, get a pair of #caresocks as a thank you. Become a monthly supporter today!

Share your story

Want to raise awareness or share positivity? Write your local newspaper’s health reporter and tell them your story. Or, become a SRNA Hope Ambassador and help share a message of encouragement to our community. Submit your story and raise awareness!

Write or call your politicians

Take it a step further and write a local politician. Do you want to see better funding for healthcare? Is there a prescription drug bill that you are hoping will pass? Write or call your elected officials and tell them your story. And make sure to let us know about it!

Start an Awareness Day

Go a step further and get a day in honor of your diagnosis. Our Georgia Support Group Leader, Kim Harrison, is participating in her fourth Rare Disease Day in Atlanta. She’s also worked with the legislature to get February 15 to be Georgia TM Awareness Day.

As always, if you have other great ideas, we’d love to hear them. Please contact Jeremy Bennett at jbennett@wearesrna.org for more information and tell him how you plan to get involved. He’ll even send you cool 25-year SRNA materials to use.

Eating Out for a Good Cause

By Barbara Sattler

Barbara Sattler is on the Board of The Siegel Rare Neuroimmune Association. While a city court magistrate in Tucson, Arizona, Barbara contracted transverse myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement, she has written three novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on Amazon.com.  Barbara also has a blog.

Many of us think of fundraising as fancy dinners, silent auctions, golf tournaments and, of course, the walk-run-n-rolls. Those events are fabulous and generate lots of money. They also take lots of planning and time. For many of us, the thought of putting on an event like that is daunting.  For some of us, getting out of bed in the morning is daunting.

Recently, I had a much simpler idea that can be done by one person, although Julie Barry, a SRNA member, and I did it together. My son Ben (and his partner) recently opened The Drunken Chicken, a restaurant whose specialty is chicken and waffles, and craft beers, but also serves a variety of chicken sandwiches, burgers, ice cream and waffles, mac and cheese, and funky appetizers.

Ben was willing to let us do a fundraiser there. Between 4 and 8 pm one evening, 25% of all sales were donated to SRNA. We also set up a table and gave anyone who came in a SRNA bracelet and a brochure about SRNA. As one of my friends said, “Great idea, eat for charity.”

Julie and I publicized the fundraiser on Facebook and with individual invites to friends, book club members, and family. Facebook gave us the option of a donate button which allows people to donate immediately on the Facebook page (at no cost to SRNA or the Facebook user). Folks who couldn’t show up that evening sent donations through Facebook, by mail or in person.

This is an easy way to raise money. Little preparation. Lots of fun. Our family and friends attended, plus people who just came to eat and wound up learning about SRNA. Some gave more.

I was lucky to have a son in the restaurant business.  You can do an event like this with other businesses besides restaurants, such as a hair salon or sports business. If the items are higher end, you might consider a smaller percentage given to SRNA. All you need is one person in business who wants to help.

As a reminder, if you buy from Amazon, sign up for Amazon Smile. It costs you nothing, but a small percentage of whatever you spend goes to the organization you specify which is, of course, SRNA.

Big events and gifts are terrific, but as many politicians have found out, small gifts add up.