My name is Robert DeRemer, Jr. I am currently 51 years old. I was diagnosed with XLH when I was seven. A few years ago, it came to my attention that the Frank H. Netter School of Medicine at Quinnipiac University in North Haven CT was recruiting people with XLH to investigate their mobility, strength and flexibility, and to talk about how patients manage their lives.
I was lucky enough to be approved for the research study, where I met the principal investigator Carolyn Macica. The entire faculty and students from Quinnipiac were great to us during the tests. Right from the beginning, I could tell that Dr. Macica was very dedicated to the field of XLH. She strives to do the best to educate people about the rare disease as well as expand her own horizons through many research projects. She continues to be a source of support for me.
As XLH Day 2017 approached, Dr. Macica mentioned that help was needed to raise funds for the event. Since I'd just started to bowl (as a result of progress in my physical abilities after joining a clinical trial), I thought to myself: How about a Bowl-a-thon?
My plan then went into action! The bowling alley was very supportive and through friends I was able to find a DJ that would volunteer his services. I also secured raffle items from many local businesses for gift cards/certificates or baskets. We ended up with over 20 raffle items! The bowling alley also donated a portion of the proceeds from each game and shoe rental. In addition, I raised funds online so that those who didn’t live locally could also support the event. In the end, I was able to raise a thousand dollars for The XLH Network, Inc.
The money was donated to The XLH Network, Inc., during XLH Day, as my way of honoring Dr. Macica. I couldn’t think of a better person to honor with donating in her name. I would like to thank Dr. Macica for everything she does for those living with XLH. I would also like to thank the Network for all they do in support of patients and giving those living with XLH a voice.
What I learned from the fundraiser is that even with a disability such as XLH, we don’t have to sit back and watch the world pass us by. When I started, I had no idea how to go about hosting a fundraiser. I just went forward with a goal in mind of helping. I never dreamed that I could host an event that would raise a thousand dollars, but I did. If I can do something like this, you can too!
For more on how you can help, check out the Network's #GivingTuesday page: https://xlhnetwork.networkforgood.com/projects/40097-givingtuesday