Above / Naperville community rallies together to support former resident, Kristen Kaiser Gray and her family. (Photo credit to Larissa Block.)
UPDATE, April 27, 2016 / “I have some wonderful and exciting news for you,” wrote Jini Clare, eager to share good news with the community. “In many ways because of your efforts and generosity, there is hope for Charlotte and Gwenyth Gray — two little girls who are suffering from Batten Disease.
“Last fall, the entire Naperville community and others joined together to help raise funds for research to help cure this disease. Money raised through the Charlotte and Gwenyth Gray Foundation was given to a research lab in South Dakota that is working on genetic therapy, and several months later a procedure was discovered.
“Charlotte and Gwenyth have both undergone a unique experimental treatment, and so far it looks good.
“Please see the article (exclusively in People Magazine) received this morning. Everything was kept private until both girls had undergone treatment.
“Thank you again for all your support, kindness, and prayers. This could help thousands of children with neurological disorders,” added Clare. “This is truly a miracle. Please continue to remember the girls and their parents in your prayers.”
Another story online featured by Deadline / Hollywood is posted here.
Above / On October 3, Friends for the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease brought the Naperville community together to heighten awareness about the degenerative brain disorder, raising more than $350,000 for life-saving research.
Original Post, Sept. 9, 2015 / Lifelong friends, caring strangers, and compassionate community leaders have joined together in a race against time to help save the lives of two little girls, Charlotte and Gwenyth Gray, whose mother, Kristen Kaiser Gray, grew up in Naperville.
The children were recently diagnosed with Batten disease, a rare genetic, degenerative brain disorder that will lead to disability and an early death unless a cure and treatments are found quickly.
On October 3, Friends for the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease will hold a benefit at the Embassy Suites at 1813 Arbiter Court in Naperville. The event will feature a 6:30 cocktail reception, dinner, entertainment and a live auction. Celebrities Giuliana and Bill Rancic will host the evening. Tickets are $150 each, and sponsorship packages are available.
Overview since March 2015
It was in March of this year that Kristen and her husband, Gordon Gray, received the devastating news that their four-year-old daughter, Charlotte, had Batten disease. A week later, they learned that their two-year-old daughter, Gwenyth, had the same genetic disorder.
Crushed but determined that they would fight for their children’s lives and a cure for Batten disease, they reached out to scientists and researchers across the globe. Telling those scientists, “You find the cure. We’ll find the money!” they founded The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease. Facing this tragedy with courage, they brought in several teams of researchers and began an effort to raise over $10 million.
With Gordon’s highly respected reputation as a Hollywood film producer, celebrities joined the fund-raising effort, and national media carried the story. By the end of August, the nonprofit foundation had raised almost $2 million.
Touched by Naperville
When they first received the news of Charlotte’s diagnosis, Kristen also reached out to her close childhood friend, Casey Breese McCormick, in Naperville. The two had met as 6-year-olds on the YMCA swim team and had remained best friends throughout their years at Naperville North High School, college, and as young mothers. Taking the phone call while shopping at Trader Joe’s, Casey cried. Then she went home, contacted some of Kristen’s other high school friends, and together they set up a Facebook page, Friends for the Charlotte and Gwenyth Gray Foundation.
The word of the children’s plight quickly spread throughout the community. Children set up a lemonade stand near the Farmer’s Market and raised funds and awareness every Saturday morning throughout the summer. NCTV 17 interviewed Casey and Kristen when Kristen and her children visited the area to attend a medical conference on Batten disease. Local media ran major front-page stories. Naperville friends who now live in Colorado climbed Grays Peak, one of Colorado’s 14,000-foot mountains, on Kristen’s birthday in August and raised over $24,000 in sponsorships. Rotary Clubs and other organizations opened their hearts and wallets, and Naperville business and civic leaders met with Kristen’s local friends to brainstorm ways to help.
Awareness & Benefit Planned
One of those business leaders is Tom Miers, president of Naperville Bank and Trust. His response to the tragedy was immediate. “Supporting this cause is at the true heart of Naperville, a community of caring and generous people who are known to rally around important needs.” He said, “I was also inspired by the fact that so many deep and meaningful relationships start at the YMCA. Casey McCormick and Kristen Gray swam together as 6 year olds and continue to be great friends today.”
Naperville’s new first lady, Julie Chirico, agreed. “What makes Naperville so special is how we gather around friends and neighbors in need. We’re a community with a huge heart. Every single person I have told about Charlotte and Gwenyth has said to me, ‘What can I do? How can I help?’”
Chirico added, “I am working with an amazing group of people planning and organizing this event. It is going to be a wonderful evening. Giuliana and Bill Rancic are joining us as hosts, and our very own Ray Kinney will be our live auctioneer. I believe that Naperville can make a difference and do our part to save these little girls and all the children suffering from this absolutely horrible disease.”
Three of Kristen’s local friends – Casey McCormick, Bianca Morin, and Whitney Robbins – are chairing the October 3 benefit. Honorary co-chairs include Naperville Mayor Steve and Julie Chirico, System President Edward-Elmhurst Health Pam Davis, Tom and Brenda Harter, and Tom and Pati Miers.
Support is appreciated
Casey McCormick and Kristen’s other childhood friends have been amazed and gratified by the community’s reaction. “Kristen and her family have been so touched by the support they have received,” McCormick explained. “Their hearts are full. This has given Kristen and Gordon hope and has strengthened their spirits when they are feeling down. We can’t say ‘thank you’ enough to this incredible community.”
Kristen added, “I get asked often where I am from and always proudly say Naperville, Ilinois. I have such fond memories of growing up there — neighbors knew each other and the community supported one another. Great family values, great amenities and a safe environment to raise a family. It wasn’t until I left Naperville for LA. that I realized most communities don’t offer that comfort. I made lifelong friendships in Naperville, and I could not feel more loved and supported by these people and the countless others I have never met. This ‘movement’ that is happening for my family could change the lives of other families, too, all because someone cared and wanted to do something about it!”
Find out more…
Organizers are hoping for a sell-out crowd to fill up the ballroom at the Embassy Suites on October 3.
For more information or to purchase tickets, call (630) 369-9070 or email napercurebatten@gmail.com.
For more information about The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease and the research efforts, visit www.curebatten.org.
Story and photo submitted by Clare Communications
RELATED PN POSTS & PHOTOS / Search “Batten Disease”
Editor’s Note Sept. 4, 2015 / Below is a comment from Chloe Rebecca Wilson in South Africa in response to the PN story above…
Hi. Please read. This is my three year old niece named Holley. Holley has Batten disease and our family is lost and broken. We live in a small country town called Peterborough, SA. This is a rare disease and has not cure, but either America or England might be able to help. I made a fund page to help withfund. Please help. This perfect little girl doesn’t deserve this. Here is her link: http://www.gofundme.com/holleysophie
