“ The most significant advocacy work happened a few years ago when the Affordable Care Act was threatened ,” explains Jon .
“ The most significant advocacy work happened a few years ago when the Affordable Care Act was threatened ,” explains Jon .
“ That was probably the most urgent , important , and effective advocacy by the patient community — and not just those with MS but people living with chronic illness or just worried about healthcare accessibility . It clearly stands out in my mind , and we may be facing similar threats in the future .”
You don ’ t have to be a legal expert or professional lobbyist to act , and engagement in the MS community takes many forms . Simply sharing personal experiences can bring abstract concepts to life for those who have no frame of reference . If you ’ re not sure where to start , visit the websites of high-profile MS organizations , such as the NMSS , the Multiple Sclerosis Foundation , and the MS International Federation for guidance .
REFERENCES 1 Marrie RA , Salter AR , Tyry T , Fox RJ , Cutter GR . Preferred sources of health information in persons with multiple sclerosis : Degree of trust and information sought . Journal of Medical Internet Research . 2013 Mar 17 ; 15 ( 4 ): e67 . doi : 10.2196 / jmir . 2466 . 2 Berhanu D , Leal Rato M , Canhoto AI , Vieira da Cunha J , Geraldes R . Online information search by people with Multiple Sclerosis : A systematic review . Multiple Sclerosis and Related Disorders . 2023 Nov ; 79:105032 . doi : 10.1016 / j . msard . 2023.105032 . 3 Altunisik E , Firat YE , Kiyak Keceli Y . Content and quality analysis of videos about multiple sclerosis on social media : The case of YouTube . Multiple Sclerosis and Related Disorders . 2022 Sep ; 65:104024 . doi : 10.1016 / j . msard . 2022.104024 . 4 Pew Research Center ( 2024 ). Internet , broadband fact sheet . https :// www . pewresearch . org / internet / fact-sheet / internet-broadband /. 5 Pew Research Center ( 2024 ). Social media fact sheet . https :// www . pewresearch . org / internet / fact-sheet / social-media /. 6 Keenan A , Le HH , Gandhi K , Adedokun L , Jones E , Unsworth M , Pike J , Trenholm E . Shared decision-making in the treatment of multiple sclerosis : Results of a crosssectional , real-world survey in Europe and the United States . Patient Preference and Adherence . 2024 ; 18:137-149 . doi : 10.2147 / PPA . S440410 . 7 Kuusisto , H ., Apila , S ., Saranto , K . Information provision and quality . A pilot study on shared decision-making in multiple sclerosis . Studies in Health Technology and Informatics , 2022 Jun 29 ; 295:179-182 . doi : 10.3233 / SHTI220691 . 8 Gray E , Amjad A , Robertson J , Beveridge J , Scott S , Peryer G , Braisher M , Pugh C , Peres S , Marrie RA , Sormani MP , Chataway J . Enhancing involvement of people with multiple sclerosis in clinical trial design . Multiple Sclerosis Journal . 2023 Aug ; 29 ( 9 ): 1162-1173 . doi : 10.1177 / 13524585231189678 .
Meet Emily Reilly
Adaptive Fitness Trainer And Certified Fitness Trainer , Illinois
Emily has been living with MS since age 17 . A proud Air Force wife , she provides customized adaptive personal training to individuals with limited mobility . Emily also creates content featuring exercises to encourage and empower people living with MS to keep moving , adapt , and overcome .
Active on social media , Emily values her connections but acknowledges a certain amount of risk . “ Social media can be a really hard place and can impact mental well-being . Be cautious when putting yourself out there . But know that if you want to share your story , it has power and it matters .” Her MS-related activities include the following :
• Content creator : YouTube , Instagram , and other social media channels
• NMSS : Healthcare Provider Engagement Manager from 2019 – 2022 ; represented local chapter on Capitol Hill for Public Policy Conference ; fundraising via Walk MS
• Congressionally Directed Medical Research Program ( CDMRP ): Peer Review Panel , which involved reviewing research applications to highlight issues important to people with MS as well as caregivers
• Can Do MS : Consultant
• Clinical Trial : Participant in trial involving MRI scans to watch disease progression
Emily encourages anyone interested to search for opportunities on clinicaltrials . gov , noting that research into how MS affects the non- Caucasian population is lacking . She also suggests starting with large organizations like NMSS that focus on patient education , as well as support groups where you can share experiences and make connections .
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