If there is a platinum lining to the cancellation of large in-person events, it is this: Moving events online allows anyone, anywhere in the world, to attend, provided they have an internet connection. Kelly Brazzo, co-founder and co-chair of the CureLGMD2i Foundation, has taken advantage of that opportunity in her plans for the 10th annual signature game night, which is the organization's largest fundraising event.
"People from all over the country are signing up," Brazzo said. "The majority are people with the disease who haven't been able to attend in the past because of travel limitations."
Brazzo predicted that more than 300 people will log on for the online event on Saturday, Oct. 24, rather than the usual 130 to 150 who have attended previous years' events at Eden Resort and the Lancaster Elks. One of those people will be Dallas, Texas, resident Melissa Grove, who will serve as the master of ceremonies.
Grove is a therapist and a professional speaker with a background in theater arts. She also has limb-girdle muscular dystrophy type 2i (LGMD2i), a genetic condition that results in weakness and muscle wasting, particularly in the shoulder and hip areas. It is a progressive disease and can result in significant cardiovascular, respiratory, and overall physical complications.
Grove was diagnosed at 18 and is now 52. She runs a $2 million nonprofit in North Texas but has begun making plans for her transition out of the organization. LGMD2i progression has meant that Grove has limited use of her arms and legs, and breathing is a challenge. Grove related that a barista once accidentally gave her a coffee one size larger than ordered. As Grove carried the beverage into the mall, she realized it was too heavy for her to hold. She had to stop every few steps to take a sip until it no longer strained her arm.
"I've watched myself disintegrate. It's a slow erosion of abilities - that's what's really tricky about it," Grove commented. "Just the small things people take for granted (are difficult)."
Grove and Brazzo, whose daughter Samantha is a seventh-grader who also has LGMD2i, are excited that at least two treatments for LGMD2i have entered the human trial phase.
"We always promised (Samantha) that by high school, we'd have a treatment for her," Brazzo said. "We're ahead of schedule now, if the treatment does what it promises to do."
CureLGMD2i has funded more than $600,000 in research projects, and with the announcement of clinical trials, the foundation has also begun to develop a travel fund that will cover the costs for people with LGMD2i, along with parents or aides as needed, to travel to testing sites and conferences. The foundation also hosts an annual LGMD2i conference in Iowa.
"The research is very important because it's what's going to get us out of this, and the conference is important because it brings us together," Grove remarked. "To be in the same room as someone with my exact same disease ... is incredibly healing and important."
Grove is excited about the prospect of treatment options, and she hopes many people will attend the Oct. 24 event to learn about LGMD2i. "Get to know some of the people you're supporting - actual people who are living with muscular dystrophy," she invited. "They're just living their lives and working their jobs and trying to stay afloat, but they're doing it with a physical disease."
The games aspect of the Oct. 24 event will be minimal, but there will be a "Vegas" theme. The event will be hosted on Zoom from 7 to 9 p.m. and will include a virtual happy hour, an online auction, and prize drawings. Additionally, an LGMD2i family with professional singers will perform, the new ambassadors will be announced, and pharmaceutical company representatives will speak about available clinical trials.
There is no cost to attend the event, but registration is required. Sponsorships are available as well. To register to attend or to sponsor as well as to learn more about LGMD2i, readers may visit https://curelgmd2i.com. Readers with questions may email Brazzo at kbrazzo@curelgmd2i.org.
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