We are continually moved by the creativity and unwavering passion that our families exude in their DIY fundraisers that make our mission possible. My Mission, My Impact, is dedicated to spotlighting some incredible events and fundraisers that breathe new life into our continued mission. The families featured have channeled their creative energy and talents to actively participate in our mission of improving care for JM patients on our quest for a cure.
We hope that you enjoy this new feature and feel inspired to leverage your passions and talent for our shared cause.
Our first feature sheds light on the Carlson family’s (Grandparents of Emma Weiss) cycling campaign to raise awareness and funds for JM kids like their own Emma. The Carlsons tackled two rides covering over 500 miles in the beautiful Pacific Northwest.
Finishing strong!High fives for the cause.
Q & A With The Carlsons About Their Adventures
1) Tell me about your event. What exactly is the event, and how can people support/participate in it?
There were two separate rides/events. We biked from Seattle to Portland, roughly 200 miles in 2 days, and biked from Astoria, OR, along the coast to Crescent City, CA, about 390 miles, carrying all of our own supplies and camping along the way.
2) Why did you choose “cycling” for the fundraiser?
In our family, we all love to bike and thought it would be great to raise awareness and funds for JM.
3) What goals or outcomes do you hope to come out of this event or fundraiser?
Raising awareness for Cure JM and hoping people would be inspired to donate so we can find better treatments & a cure for our kids.
4) What inspired the idea for this event or fundraiser?
In the early days of Emma’s illness, she couldn’t walk very far or ride her bike, as we never want to go back to that- we hope next year Emma can “Ride for a Cure” on her own and more friends or family members will join in on a smaller scale. Like maybe a 5-mile biking parade through our town?
5) How has this event or fundraiser helped you feel connected to Cure JM’s mission of improving the lives of those affected by JM and/or seeking a cure?
Realizing that without treatments, many kids with JM are not able to do the activities that they enjoy and we should not take our health for granted. We want to be more active while we can. We also hope raising money will help improve the treatment so that all JM kids can get back to doing the activities that they love.
6) Why is community support/participation so important to the success of this event and/or Cure JM’s mission?
Before Emma’s diagnosis we had never heard of JDM, but within the first hour of her hospitalization, we found the Cure JM website. We were relieved to see that even though this is a rare disease, there was so much information and already a community of other families. We want everyone to learn more about Cure JM’s mission, and support finding a cure.
On the bike rides, many people asked us about Cure JM just from seeing us wear our shirts. Next year we want a QR code printed so that people can get directly connected with the foundation easier. We hope people along the way were inspired by what we were doing and will support Cure JM in the future.
Austin Krainz, diagnosed with juvenile dermatomyositis at the age of seven, overcame the challenges of a rare disease with the support of his family and pioneering treatment from Dr. Lauren Pachman. After more than a decade of battling the illness, Austin entered remission, fulfilling his childhood dream of professional racing in Porsche’s GT America series.
Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.
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