Community Stories: Hear from Participants of SRNA’s Rare Do Care Walk-Run-N-Roll
It’s not too late to join in on SRNA’s Rare Disease Month by participating in the Rare Do Care Walk-Run-N-Roll (WRNR)! Throughout the month of February, participants have been logging their miles as they walk, run, or roll in their neighborhoods. With a few days left, you can still join in the fun and help make an impact for those living with rare neuroimmune disorders.
We recently asked some of our community members to share about their participation in this virtual event. Below, meet Philip Rive and Dante Fiorenza and find out more about their stories.
Philip Rive
Why did you decide to participate in the Rare Do Care WRNR for Rare Disease Month?
There is no more effective organization than SRNA to better the diagnosis, treatment, recovery and ongoing quality of life for me and other TM and other rare neuroimmune condition survivors.
I work harder and feel better about my recovery and health when I combine service to others with a shared fitness goal.
Did you choose to run, walk, or roll? Why?
I chose to run because I’ve been a serious and social runner for the past 45 years, including Marathons. At the time of my TM diagnosis, I couldn’t run and could barely walk. Four years later, I can run with difficulty up to 6 miles. I’m often running at the edge of my post-TM mental and physical capabilities, at times falling, feeling less than coordinated, and always with some or much pain and fatigue. But the resultant sense of satisfaction, the gratitude for what I still have, and the confidence to get out of bed each day and try to still live my best TM life, makes my running worthwhile, if not essential.
Is there anything you would like to say to those who contributed to your campaign?
As a novice and typically reluctant fundraiser from family and friends, I’m grateful to Lydia Dubose (SRNA’s Volunteer & Community Coordinator) for nudging me to fully sign up. The $400+ donated to my effort to date, is a sign of love and support that strengthens me. It is also a testament to the value of SRNA and the passion I share with it, to make our often invisible pain and redemptive journeys more helpful to those who do, or who will in the future, walk this challenging rare neuroimmune path.
Dante Fiorenza
Why did you decide to participate in the Rare Do Care WRNR for Rare Disease Month?
I decided to participate in the Rare Do Care Event to raise money and awareness for rare neuroimmune disorders. I prefer to walk my miles since it’s less strenuous than jogging/running.
Tell us about your diagnosis, and about where you’ve been walking for this WRNR?
I am a member of The Trustees Of Reservations in Massachusetts which protects over 25,000 acres of land and offers hundreds of places to explore, hike and learn. I have been visiting some of these places and logging my walking/hiking miles. In 2015 I was diagnosed with Transverse Myelitis and went through all the necessary testing i.e., spinal tap, MRIs, bloodwork, eye exam. As far as I know, it was a one-episode event, and while my symptoms aren’t extreme, I do suffer from spasms, pain, and lack of sleep. In light of this, I still feel I am fortunate that things aren’t worse.
Is there anything you would like to say to those who contributed to your campaign?
Hopefully by doing these awareness events, other people can get more insight into rare neuroimmune disorders, and I am very thankful to my friends and family who have contributed to the cause!!!
We are extremely grateful for Philip, Dante, and all participants who have come together to support SRNA’s mission and spread awareness of rare diseases. If you would like to participate in SRNA’s Rare Do Care Walk-Run-N-Roll, you can sign up here.
