News and Press Releases
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NASCAR Racecar Design Contest
March 8, 2011
WJACTV News
To watch the video, click here
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Johnston Family Hopes Promotion Shines a Light on Rare Disease
March 8, 2011
Daily American
by Dan DiPaolo
"Family and friends of 17-year-old Jessica Ambroe are hoping to shine a national spotlight on Lafora disease with the help of NASCAR..."
Read more
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Purple Day for Jess
May 9, 2010
WJACTV News
"Alone we can do so little, together we can do so much.” See how students in Pennsylvania are making a difference in bringing awareness about Lafora.
To watch the video, click here
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KFVS News
April 21, 2010
"Living with Lafora: rare disease affecting Malden teen"
By Crystal Britt
"A Malden teen is fighting a battle that looks like, unless there's a miracle, it can't be beat. Jake Buie though isn't suffering alone. He has his family and friends to help him as he lives with something called Lafora..."
Read more
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KSEE News
March 29, 2010
"Lemoore Students Raise $10K for Classmate With Rare Illness"
"Lemoore teen Doug Lucken is living with constant seizures that have attacked his memory, muscle movement and most of his speech. It's all part of Lafora Disease, a very rare ailment ..."
Read more
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Jersey News
March, 2010
"Hope for John"
"Islanders in Jersey have turned out in their thousands to help find a cure for what is at present a terminal illness. Last year a Jersey teenager was diagnosed with Lafora Body Disease - an extremely rare condition. There are only 200 known cases in the world..."
Watch the video
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The Sentinel
January 16th, 2010
"DJ's Hope"
by Melissa Knopp
"He was a healthy 14-year-old boy with a smile that stretched from ear to ear. As an incoming freshman at Lemoore High School, Douglas Lucken, or DJ, was
popular with the girls and had a knack for working on bikes..."
Read the article "The Hanford Sentinel"
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Partners in Discovery
UCLA Department of Neurology
"Chelsea's Hope: Grassroots Effort for a Cure"
Fall 2009
"Lafora disease, also called Lafora progressive myoclonic epilepsy, is a rare, progressive and degenerative form of epilepsy that strikes children between the ages of nine and 14..."
Read the article "Partners in Discovery"
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Jess's Army Joins Chelsea's Hope
December 2009
" Savage Employees Have Joined the Fight"
"Salt Lake City, Utah based Savage Services, a transportation and materials management company with operations throughout the U.S. and Canada, has joined the fight against Lafora disease. Jessica Ambroe of Johnstown PA, who is afflicted with Lafora, has had ties to Savage since she was a toddler..."
Read more about Jess's Army
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Diablo Magazine
October 2009
"Rare Genetic Disorder Fundraiser in Alamo this Sunday:
Danville mother starts foundation to help daughter suffering from Lafora"
by Bethany Souza
"Danville resident, Chelsea Gerber, was a normal teenage girl. She played soccer, loved to dance, and had just started attending Monte Vista High School when everything changed..."
Read the article in Diablo Magazine
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The Daily American
Thursday, October 1, 2009
"Johnstown teen gains support in fight against rare disease"
by Dan DiPaolo
"When Jessica Ambroe of Johnstown was diagnosed with Lafora disease in February, it allowed her family and friends to put a name to the affliction they had struggled with for more than a year..."
Read the article in the Daily American
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Danville Weekly
September 18th, 2009
"A lifeline for families struck by a rare adolescent disease"
by Susan Astbury
"Chelsea Gerber was a vivacious adolescent who loved soccer, dance, baseball, band and hanging out with her friends. "She just wanted to do it all," recalls her mother, Linda Gerber. When Chelsea, now 18, was in middle school, Linda noticed that she was having small cognitive issues.."
Read the article in the Danville Weekly
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Conemaugh School of Nursing Fundraiser
September 3rd, 2009
"Conemaugh School of Nursing students hold fundraiser to benefit local girl suffering from rare disease...Johnstown, PA"
Read the article
View the flyer
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Contra Costa Times
June 2009
"Rare disease inspires Danville family to share information
Parents of woman with Lafora work to help others"
"DANVILLE — When doctors told Linda Gerber that her daughter, Chelsea, might have Lafora disease, a rare form of epilepsy, they also told the Danville woman not to bother looking on the Web for information about it..."
read the article from the Contra Costa Times...
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ALIVE Magazine
May, 2009
"Imagine an active and vivacious teenage girl who is as healthy and vital as her classmates...And imagine that this girl, at the age of 14, suffers her first grand mal seizure..."
read more
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J Weekly
November, 2008
"Charitable Giving From the Heart"
"In the simplest terms, it is do-it-yourself philanthropy.
With a sum that could be as modest as $5,000, one can establish a donor-advised fund to benefit the cause — or causes — of one's choice..."
For more about Sarah and Rachel Kahn's Charitable Fund:
Read the article
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