FIND A SCN2A SPECIALIST

SCN2A MULTIDISCIPLINARY CENTERS

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The FamilieSCN2A Foundation recognizes the need for specialized care for families affected by SCN2A-related disorders. This year, thanks to the generous support of our donors and community, we will be launching SCN2A Multidisciplinary Clinics (MDC). The goal is to have one in every region to alleviate the stress of travel on our families. These SCN2A MDCs offer an opportunity for patients and caregivers to receive true coordination of care across each of the clinical aspects of SCN2A-related disorders from experts who understand the condition. This coordination allows for proactive rather than reactive treatment of SCN2A-related disorders, which should improve the treatment and quality of life of patients and caregivers. Furthermore, each MDC will have expert research teams offering opportunities to contribute to SCN2A research and future clinical trials, which could support transformative new medications for this condition.

Click here to request appointment.

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John J. Millichap

MD Pediatric Neurologist & Epileptoligist

Website: precisionepilepsy.com

Dr. Millichap is a private-practice pediatric epileptologist and clinical neurophysiologist at Precision Epilepsy PLLC. His current clinical practice utilizes an innovative telehealth approach to the precision diagnosis and treatment of pediatric epilepsy. Dr. Millichap has over 60 peer-reviewed publications and serves as the Editor of Pediatric Neurology Briefs. Dr. Millichap is an Adjunct Associate Professor of Neurology at Northwestern University and is involved in the education of trainees and grant-funded clinical research concerning epileptic encephalopathies and epilepsy genetics. He is involved in multiple clinical trials for novel treatments for rare genetic epilepsies. He advocates for his patients and their families as a member of multiple advisory boards for non-profit foundations for rare genetic epilepsies, as Chair of the Medical Advisory Council for the Epilepsy Foundation of Greater Chicago, and as a member of the Child Neurology Foundation’s Board of Directors.

Disclaimer: FamilieSCN2A Foundation does not endorse any particular care provider or center and provides this list only as a service to the community. Not all of the professionals and institutions listed on this site have the same treatment approach. Your decision to select a particular health care provider and/or treatment option is yours alone, and FamilieSCN2A Foundation bears no responsibility for the care provided by any professional listed on this site or for outcome of any treatment option you may select.

Criteria: Professionals listed on this site have treated patients with SCN2A related disorders and/or related ion channelopathies and many have been recommended by their patients’ families. All recommended providers will be added to the list. If, however, an initial recommendation is withdrawn, or if FamilieSCN2A Foundation receives complaints about a particular professional from families who have first-hand experience with that individual, then FamilieSCN2A Foundation may, in its discretion, elect to remove that professional from the site.

Other Ways to Get Involved

Whatever you decide, please let us know. We are here to support you with ideas, resources and more. Check out the FamilieSCN2A Fundraising Page on facebook to see how others have helped.

FUNdraising

FUNdraising is not only about money, it also raises public awareness of SCN2A and the issues around rare diseases in general.

Raise Awareness

Share your story with friends and family, in private and/or through social media. Share our website with them.

Donate

Make a tax deductible donation directly to the FamileSCN2A Foundation to be used for raising awareness, research and supporting families

Raise Funds

Sign up with iGive, an automated program that donate a portion of online sales to charity.

Have a Party!

There are many direct sales vendors who would be happy to do a fundraiser for you.

Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!