Rare Disease Day: 5 Ways You Can Help Those with JDM

I’ve been looking forward to creating this video with both excitement and nervousness. I’ve donated my hair a number of times over the years but I’ve never cut it myself. In the video, I share why and ways that you can help those who battle rare diseases like my daughter and her fight with juvenile dermatomyositis (JDM).

5 Ways You Can Help those with JDM

1. Contribute to a Charity – Find a charity that truly supports patients and their families. I can’t say enough about the Cure JM Foundation. I have a donation page set up that you can visit at curejm.org. You can also learn more about our journey here on my website juliegolob.com/curejm.
2. Host a fundraiser on Facebook or YouTube – Both Facebook and YouTube make fundraisers easy. Head on over to your Facebook profile, click on the menu button and scroll to find the heart button that will help you set up a fundraiser. You can also use YouTube for fundraising efforts. Just scroll to the bottom of your upload screen and look for the section “Giving – Add a fundraiser to your video.” The video above is a fundraiser and I’m also hosting a Facebook fundraiser too.
3. Give platelets – I have a dear friend who regularly donates platelets. Platelet donations are a crucial ingredient in IVIG, a common yet extremely expensive treatment for many JDM patients. IVIG is like a wonder cocktail that truly helps the immunocompromised and it’s only made possible because of people like my dear friend and others who don’t just give money and time, but a part of themselves too. Learn more at the American Red Cross.
4. Prayers and acts of kindness – These things really do make the fight so much easier. Our family has received so many prayers, well wishes, trinkets and words of encouragement. People have shared our fundraisers and have helped bring awareness to JDM. We are so grateful for this kindnes and I believe it truly makes a difference.
5. Grow and donate your hair – It takes time, but this is a gift that can make a huge difference for someone on chemotherapy medications. I chose to grow and donate my strands to Wigs for Kids. Learn more about them and their mission here.

Thanks so much for watching and reading this post. I am so grateful for your time.