Attending the Volunteer Leadership Conference once again was an empowering experience for Rachel and Jerry Cravens.
For the second year in a row, the Seymour couple were a part of the invitation-only event that brings together the Cystic Fibrosis Foundation’s most dedicated volunteers.
The volunteers share their success stories, receive cystic fibrosis medical and scientific updates and plan for the year ahead.
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The Cravenses attended their first conference last year in Dallas, Texas, and more than 500 foundation volunteers from all over the United States were invited to attend the 15th annual event March 16 and 17 in Washington, D.C.
Rachel and Jerry continue to do what they can to help find a cure for cystic fibrosis, which their 20-year-old daughter, Megan Cravens, has had since she was born. She’s now a sophomore at Indiana State University studying marketing with a concentration in marketing management.
The genetic disease, which progressively limits a person’s ability to breathe, is rare, with about 30,000 Americans having it.
“While we were at the event, we also celebrated that the Great Strides Walk, which we have participated in since Megan was around 4 years old, will be celebrating 30 years of success this year,” Rachel said. “It has taken $3 billion and 25 years to get where we are now in research. Projects from the Cystic Fibrosis Foundation show we will need $9 billion more to cross the ‘cure for all’ finish line.”
During the conference, Rachel said they learned about the progress and new developments in cystic fibrosis treatments that are in the pipeline, which give hope for her daughter and others.
There is no cure for cystic fibrosis, and the median predicted survival age is 41, but that has increased as more therapies and medications are developed.
“There was a lady that was 44 years old at the conference with cystic fibrosis and had been through a very difficult time with cystic fibrosis, and at one point, she was on the dance floor with her husband and two children, and I became emotional thinking about how those with cystic fibrosis can finally dream of living past their 30s and having extended lives and even families,” Rachel said.
A new medication, Symdeko, recently was approved by the Food and Drug Administration and had great clinical results, Rachel said. Megan is starting it soon.
“Without the support of the research by the Cystic Fibrosis Foundation, these treatments and medications would not be possible,” Rachel said. “That’s why myself and my family are dedicated to continue to raise money for the Cystic Fibrosis Foundation with events like the Megan’s Wish dinner and auction and other events.”
The 16th annual Megan’s Wish is set for April 14 at Celebrations, 357 Tanger Blvd., Suite 101, Seymour.
Dinner from Texas Roadhouse will be served from 4 to 5:30 p.m., with options for an adult meal ($12), kids meal ($6) and kids hot dog meal ($3). Tickets will be sold through April 6 and may be purchased by calling Rachel at 812-569-4289.
The live auction, led by auctioneer Bobby Honey, will start at 5:30 p.m. Auction items include gift certificates and items donated by local businesses, a wood stove, amusement park tickets, gift baskets, ladders, autographed sports memorabilia and more.
Other features include music by disc jockey Jason Noel during the dinner, children’s activities, a 50/50 raffle and door prizes.
Proceeds from the event go to Great Strides, the Cystic Fibrosis Foundation’s largest national fundraising event with walks in nearly 500 cities nationwide to support the mission to cure cystic fibrosis. The foundation funds research, treatments and continues to work toward a cure.
This year’s local Great Strides Walk is at 3:30 p.m. Sept. 15 at Seymour Middle School.
“A huge ‘thank-you’ to all the businesses that donated auction items,” Rachel said. “Without the help of the community, we wouldn’t be able to do what we do. I am so very thankful for the support.”
In the past 15 years, the Cravens family has raised more than $111,000 for the Cystic Fibrosis Foundation to help find a cure for cystic fibrosis.
“I hope that one day, I can look out on the dance floor and see Megan dancing with her husband and children and not even thinking of fighting for her next breath,” Rachel said.
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Local fundraisers are set this year to benefit the Cystic Fibrosis Foundation.
Megan’s Wish dinner and live auction
When: April 14 (dinner from 4 to 5:30 p.m., auction at 5:30 p.m.)
Where: Celebrations, 357 Tanger Blvd., Suite 101, Seymour
Cost: Adult $12 donation includes Texas Roadhouse barbecue chicken, two sides, roll and butter, drink and dessert (meat can be substituted with choice of hamburger, hot dog or barbecue pork; pork provided by Bill and Marlis Kidd); kids Texas Roadhouse meal $6 donation is the same as an adult but only half the portion of chicken; kids hot dog meal $3 donation comes with a hot dog, a bag of chips and a drink; tickets sold in advance through April 6 by calling Rachel Cravens at 812-569-4289
Auction items: Gift certificates and items donated by local businesses, a wood stove, amusement park tickets, gift baskets, ladders, autographed sports memorabilia and more (items may be viewed on the Megan’s Wish Facebook page)
Other features: Music by disc jockey Jason Noel during the dinner, children’s activities, a 50/50 raffle and door prizes
Pallet party
When: 2 p.m. April 29
Where: Girls Inc. of Jackson County, 956 N. O’Brien St., Seymour
Cost: $35 for 24-by-24 or $25 for 12-by-12; a freewill donation will be accepted for the Cystic Fibrosis Foundation
Register: The design, size and colors need to be shared ahead of time by emailing [email protected]
Bake sale
When: 10 a.m. May 12
Where: Walmart Supercenter, 1600 E. Tipton St., Seymour.
Great Strides Walk
When: 3:30 p.m. Sept. 15 (check in at 2:30 p.m.)
Where: Seymour Middle School, 920 N. O’Brien St., Seymour
Register: fightcf.cff.org
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