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Friday, March 29, 2024

Friends Aim to Fund Research for Little-Known Batten Disease

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UPDATE, Aug. 16, 2015 / According to Julie Chirico, a local event is planned on Sat., Oct. 3, at Embassy Suites to raise funds and awareness about Batten Disease.

For more information or to purchase tickets, call (630) 369-9070 or email napercurebatten@gmail.com. Tickets also can be purchased online at https://curebatten.ejoinme.org/naperville. RSVP by Sept. 25.

UPDATE, July 19, 2015 / Kristen Kaiser Gray and her two daughters have returned home to California after attending the BDSRA Conference in Chicagoland. Fundraising continues to climb for the benefit of research for Batten disease and the Grays are forever grateful in this race against time. Every gift makes a difference.

For more info, visit www.visit curebatten.org.

The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease is a project of The Giving Back Fund, Inc. To give a donation by check, make payable to The Charlotte and Gwenyth Gray Foundation c/o The Giving Back Fund. Mail to The Giving Back Fund,  6033 W. Century Blvd., Los Angeles, CA 90045.

UPDATE, July 10, 2015 / Kristen Kaiser Gray and her two daughters, Charlotte and Gwenyth, are staying this week in Naperville with friends in order to attend the BDSRA Family Annual Conference in Itasca.  “Fire Up a Cure” started July 9 and runs for four days through Sun., July 12, with an extensive and educational program for families afflicted with the extremely rare neurodegenerative disease.

kristen-casey

Above / While trying to take a group photo of friends who gathered Thursday at the home of Casey McCormick in support of friend Kristen Gray and her two daughters, Charlotte reminded us that there’s no time to stand still. (PN Photo)

During their Naperville visit, Gray and her two daughters have been visiting with longtime friends and friends of friends while making contacts with local leaders to help spread awareness about the little-known Batten disease and the urgency to raise major funding to begin trials that could lead to a cure for Batten and possibly other rare diseases.

Thursday evening friends and former neighbors stopped by the home of Casey and Corbett McCormick with good cheer for the Grays.  The McCormicks and their three children, Lily, Gavin, and Ryder, welcomed Whitney Robbins with Blythe, Bianca Morin, Erin Rains, Colette Chapman, Kristen Breese, Julie Chirico, Kim Perona, Becky Humbert, Deb Callaway, Jennifer San Jose with Olivia and Jini Clare.

Stories have appeared in local media. Thanks for becoming informed. Watch for details about upcoming fundraising and educational opportunities.

“Just getting the information out will make a difference,” said Casey McCormick.

kristen-path

Above / Children of mothers who have been friends since childhood found a special connection to help each other, too.

For more info, visit www.visit curebatten.org.

The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease is a project of The Giving Back Fund, Inc. To give a donation by check, make payable to The Charlotte and Gwenyth Gray Foundation c/o The Giving Back Fund. Mail to The Giving Back Fund,  6033 W. Century Blvd., Los Angeles, CA 90045.

UPDATE, July 7, 2015 / Since this awareness campaign was launched on June 18, 2015, more than $1.5 million has been raised to help fund research to find a cure for Batten disease. The next milestone is set at $2 million toward a goal of $10 million in order to secure the team in place for gene therapy.

Special to PN
by Casey McCormick

pyramid-Scan

Above:  Friends since Naperville North High School —Casey Breese McCormick, bottom left, Kristen Kaiser Gray, Kelli Clare Stauffer; Meg O’Hara Elliott, Heather Shultz Hughes; and on top Brooke Scigousky Wedding— are raising awareness about the rare Batten disease that has stricken Kristen’s two young daughters. Photo courtesy: Casey McCormick (Circa 1993)

Kristen Kaiser Gray is my “oldest and dearest friend,” the type of friend who is more like a sister.
We first met when we were both seven and swimming on the Naperville YMCA swim team. We’ve been lifelong friends ever since.

When Kristen told me in February that her previously healthy 4 ½-year-old daughter, Charlotte, had been diagnosed with Epilepsy, I worried about her; but I knew Epilepsy was something she could manage with medicine.

Every subsequent phone call from Kristen brought scarier news. What they thought was Epilepsy was not.
Worst case scenario was the slight possibility that it was a neurodegenerative disease. When their greatest fear was found to be true and Charlotte was diagnosed with fatal Late Infantile NCL Batten Disease CLN6, devastation is the only word to describe it.

Within a week Kristen and her husband unfortunately found out that Gwenyth Gray, their 20-month-old daughter, also was diagnosed with the same rare form of Batten disease as her older sister.

Currently, there is no cure and no treatment for Batten disease. This is a rare genetically inherited disorder, where the early symptoms include a progressive vision loss, seizures, behavioral changes, and a loss of motor skills in previously healthy children. Symptoms get progressively worse, resulting in blindness, Parkinson’s-like symptoms and dementia.

Patients of Late Infantile Batten disease live incredibly short lives—with life expectancy from 6 years to 12 years old.

Kristen and I were very fortunate to be part of a very close group of friends. And now friends of friends are all stepping up to help Kristen and her family.

In a race against the clock, we have a goal to raise awareness and funding in order to fight to save these two little girls and every other child that will subsequently be diagnosed with this terrible disease.

We are in the planning stages of a benefit in the honor of these children. We are so grateful for all the help and will keep you updated with information as it happens.

For more information about Batten disease and the Gray’s story, visit curebatten.org.

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PN Ombudsman
An ombudsman is Scandinavian in origin dating back to Viking times; and refers to a community representative; usually acting independently on behalf of an organization, body of elected officials, or civic group. Thanks Scandinavia for inventing ombudsman.

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