January 2021 News

Education

We are continuing our virtual Ask the Expert series This month our Ask the Expert series will feature neurosurgeons, Dr. Sunil Patel and Dr. Brian Dlouhy. On January 14, Dr. Sunil Patel of the Medical University of South Carolina will answer any and all questions you may have for him. Dr. Patel’s specialties and clinical interests include: spine disorders, spine & spinal cord tumors, skull base surgery, trigeminal neuralgia, and minimally invasive neurosurgery.

On January 21, Dr. Dlouhy will be online with us discussing: Chiari and Craniocervical Instability from Bony and Ligamentous Abnormalities. Dr. Dlouhy will give a short presentation and then will answer your questions. Dr. Dlouhy is a pediatric and adult neurosurgeon at the University  of Iowa Hospitals & Clinics in Iowa City, Iowa. His specialties and clinical interests include: Chiari malformations, disorders of the craniovertebral junction (CVJ), and epilepsy surgical treatment strategies, and minimally invasive surgery.

Send your questions to us in advance or log on with us virtually and ask them live! For more information visit: bobbyjonescsf.org/Events

Support

In an effort to stay connected, our monthly virtual support groups will continue into 2021. We hold a support meeting for PARENTS every second Tuesday of the month at 7:00pm ET, ADULTS every last Tuesday of the month at 7:00pm ET, and HIGH SCHOOL/COLLEGE-age usually every third Sunday of the month at 7:30pm ET. See this month’s schedule below and join us!

Parent Support Meeting – January 12^th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – January 17^th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – January 26^th @7:00pm ET, hosted by Pam Fenner (Secretary of the Board of Directors)

For more information visit: bobbyjonescsf.org/Events.

IMPROVING CHIARI, SYRINGOMYELIA AND RELATED DISORDER RESEARCH IN 2021 AND BEYOND

The International Patient Registry got an overhaul to help us prioritize patient control and maximize research potential! The new system uses state-of-the-art technology, including privacy and security features that comply with (and exceed) all of the national and international requirements including HIPAA, GDPR, and CCPA. Our partners in this large research effort, a company called LunaDNA and the Genetic Alliance, have helped to make this overhaul possible. We can’t wait to explain just how this registry is going to revolutionize medical research in the new year and beyond!

In the new system you will be able to:

• Answer questions about your symptoms & other topics in a new, user-friendly interface. While the old surveys are still in the process of moving over, we will be releasing smaller studies on related disorders, the COVID-19 pandemic, stress, sleep, et cetera!
• Connect your electronic health records to your registry account. You will be able to use your username and passwords for your secure patient portals at various doctors’ offices to connect to your anonymized registry account. This will benefit research by offering more clinical data to researchers, but it can also create a handy, central location for you to view all your health records in one place— a helpful tool for patients with chronic illness!
• Share your genetic data. Now, you’ll have the ability to contribute real genetic information if you have collected any genetic information from places like 23andMe or Ancestry.com. Researchers will be able to access your anonymized genetic data and learn more about people like you based on genetic traits.
• Share your data with interested researchers safely. Interested researchers will be able to access data after undergoing rigorous IRB review and internal assessment to confirm their study protects patients. All data will always be anonymized and cannot be removed from the system at any time. This is a new, added level of security we’ve put in place to ensure that you control your data— no one else.
• Choose to earn ownership shares in our partner company, LunaDNA. This is entirely optional, but LunaDNA is a company owned by people who choose to share their data. Sharing your information earns you actual shares in the company, itself. Visit the Help Center on lunadna.com for more information.
• Gain access to up-to-date info about CM, SM & related disorders, curated by Bobby Jones CSF. As we collect more and more information and participants, we will be able to perform our own research and inspire new researchers to study even more in this field. As new publications come out, we will share them with you and to be sure that you actually get to see the research that you contributed to!

That depends! If you have already signed up as part of the International Patient Registry, you will need to use a special link. If you’ve never participated in the registry, you will create an all new account— no link necessary!

If you are already registered for the International Patient Registry, please contact Kaitlyn Esposito to get started, if you haven’t already.

If you have never created an account before for the International Patient Registry, click here and participate in our first study of the year!

21st Century Cures Passes

The House of Representatives voted to pass the 21st Century Cures Act (HR 6) in 2015 and on December 7, 2016, the US Senate voted to pass an amended version of the bill! This legislation is incredibly important to our Chiari, syringomyelia and related disorder community! It ensures that scientists, doctors, and professionals around the country are given the opportunity to pursue new, exciting research projects and to ultimately ensure that innovative, effective solutions are found for patients– especially those who struggle with chronic, poorly understood conditions like CM, SM and related disorders.

What can 21^st Century Cures Accomplish?

• Make more funds available for innovative/potential breakthrough research
• Improve research collaboration
• Incorporate more patient perspective
• Modernize and streamline clinical trials
• Expedite access to experimental drugs for patients with serious conditions
• “Personalize” medicine with advanced FDA procedures for drug development
• Create a priority review process in the FDA for innovative medical device
• Require the CDC to expand surveillance of neurological disorders

You can see a full list of the sections/stipulations of this legislation on the US Congress’ website. You can learn even more about 21st Century Cures and how it got started on the website for the Committee on Energy And Commerce.

What is S.849: Advancing Research for Neurological Diseases Act?

This bill was introduced by Senator Johnny Isakson (R-GA) as another part of 21st Century Cures. The goal of this bill is to specifically create a centralized data collection system to be maintained by the CDC to collect data on neurological conditions. Collecting and providing this data to researchers could be vital to help determine the cause conditions like Chiari malformations and syringomyelia. In addition to helping to find a cause, this data could help medical providers determine how to best care for patients with these conditions as well as help policy makers determine how to better understand these and many other neurological conditions.

2018 unite@thehill: Patient Education & Advocacy In Action

CSF is thrilled to announce that the 2018 unite@thehill will be a two-day patient conference of action! Join us on Sunday-Monday June 24-25, 2018 at the Bethesda North Marriott Hotel and Conference Center as we take on a day of learning and advocacy training and a full-day of marching on Capitol Hill to bring the patient voice to the powerful men and women in Congress who can enact laws that can help!

Visit our unite@thehill page to learn more.