Fundraising Update:
$152,000
(September 2009)
We are thrilled to inform that in the past 18 months since the inception of Chelsea’s Hope nearly $152,000 has been raised for UCLA research. Families and friends from coast to coast that are connected to Chelsea’s Hope are linking hearts and hands to help raise funds for Lafora research. We are so grateful to everyone who donates their time, energy and money in these fundraising efforts.
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Here is an excerpt from a letter received from UCLA on September 3, 2009:
“As you may or may not know, unrestricted funds, such as those that you have provided, are vital to the success of research in the modern era. Traditional state and federal funding requires grant proposals that are based on massive amounts of preliminary information and are, as such, incremental research. With unrestricted funds, one can take a sound hypothesis and a modest amount of pilot data and make a scientific leap, based on insights, minimal pilot data and strong hypotheses. Such leaps advance the field in a non-incremental way and provide breakthroughs that typically are not realized by the more traditional mechanisms. That is, innovative funding for innovative research. It is just this sort of opportunity to which your generous gift is applied.
On behalf of the Department of Neurology, thank you again for your generosity and support of research that will lead to improved therapies and, ultimately, a cure for Lafora.”
John C. Mazziotta, M.D., Ph.D.
Chair,
Department of Neurology,
David Geffen School of Medicine at UCLA
Director,
Brain Mapping Center
Associate Director,
Semel Institute for Neuroscience
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Fundraising Report (March 2009)
As of this month, we have raised approximately $116,000 for Lafora Research and it has only been about one year since we kicked off our site. Thank you to everyone who has helped us. While this is a great start- and we sincerely appreciate all contributions-this is only a START!
As Dr. Escueta has explained, the annual salary for a molecular biologist is approximately $80,000. We have already used some of our funds to pay for an EEG machine. It is clear that our fundraising efforts need to be stepped up in order to meet our expenses. As you know, Lafora Research is not being funded by the government; it is up to all of us to provide the funds to aid the researchers.
We are aware of how stretched everyone is due to the shaky economy. Everyone is feeling uncertain these days and there are many charities that need support. We don't want to ask you to give more than you can afford; we do ask that you help us by giving what you can and sharing information about our site with as many friends, co-workers and acquaintances as possible. Any and all donations are appreciated and, as we have asserted before, each dollar represents both hope and possibility.
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Katie's Birthday Bash
January 2008
Raises Over $12,000!
As the cold week wound down on Friday night, January 25, 2008, in New York City a very special event took place.
Read More
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News and Press Releases
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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Northern California Fundraiser
May 17th, 2009
$30,000 generated!
May 17, 2009 and perhaps the warmest day of the year in the San Francisco bay area, thus far, marked the First Annual Fundraising Event for Chelsea’s Hope: Lafora Children Research Fund.
The Venue, Forli Restaurant in Alamo, California, was standing room only as 125 friends, past and present joined the Gerber Family for a few hours of reconnection, information, auction items, delicious appetizers and wine. Also present were Kim Rice of Seattle and Edmond Richer of Dallas both parents to lafora children connected with Chelsea’s Hope. It was both emotional and amazing that they were able to participate in our first event. Also present and representing UCLA were Dr. Antonio Delgado-Escueta, Dr. Eain Cornford, and Dr. Machado Salas. A surprise visit by Danville’s own “Hero to the Hudson” was Captain “Sully” Sullenberger and his lovely wife Laurie.
“The Faces of Lafora” were presented beautifully on 20 x 30 photographic images so tenderly and expertly taken by our own professional photographer, Cheryl Bigman. These haunting images lined the walls of the restaurant, along with family photo collages and excerpts from letters written by parents of these children expressing the devastating heartache and sorrow in watching ones child slowly deteriorate and loose themselves to an incurable disease.
A video presentation of lafora, its effects on the brain, and current research being done was represented by Dr. Antonio Delgado-Escueta, Dr. Eain Cornford, and Dr. Machado Salas all of UCLA and renowned experts in the understanding and study of lafora. While the content of their presentation was above the heads of most lay people attending, what was most evident was the impact of this information.
To conclude the presentation was an emotional photographic slide show set to beautiful music of our children in the United States that are connected with Chelsea’s Hope. Tears flowed down the cheeks of attendees as they silently watched the images of these innocent children. I know the impact lafora has on the families affected but now from this first public event, I more clearly can see the impact lafora has on all our relationships.
Our first event was an overall success, from the emotional content and obvious heartfelt reaction to our cause, to the relationships reconnected, to the many friends who spent hours planning this event, to those who donated services as well as everyone who contributed their hard earned dollars to support research for a cure, we most sincerely thank you.
It takes a team of many making small contributions to the greater good to make a difference and with the help of everyone who contributed, nearly $30,000 was generated.
THANK YOU! THANK YOU!, THANK YOU!
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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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Slug Life
May 31st, 2009
"Fighting for Friendship and a Cure"
By Samantha Wilson
City on a Hill Press Reporter
UC Santa Cruz newspaper writes about lafora.
Read the article
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