What’s NewIn Memoriam: Chelsea Merrill
Jesse and I had an absolutely perfect wedding! We couldn’t have asked for a more special day, and one of the most special parts was the incredible generosity of all who donated to Chelsea’s Hope in honor of Kristen and our marriage.
Please know how much your donations meant to both of us.
Katie and Jesse Dixon [read more]
June 30, 2012
Golf for Epilepsy
Fundraising success on June 30th 2012 with $4,610.00 being raised for Chelsea’s Hope!
We would like to acknowledge Ryan Cosentino for making a difference in his community and ours by raising awareness about Lafora Disease. Ryan proved that through his love for cousin, Mallorie, his passion for golf, a great idea, and lots of supportive friends and family, great success can be achieved.
A big thank you goes out to Ryan for taking a stand against Lafora Disease by stepping forward in a big way. Thanks also to all the golfers and supporters that led to the success of this event. We’d like to wish Ryan great success in his future golf endeavors! [read more]
June 23, 2012
Contractor’s Charity Golf Tournament
Are you familiar with the old African proverb, “It takes a village to raise a child”? Chelsea’s Hope and its families whose children are stricken with Lafora disease is our small village. We have continuously encouraged our friends and families to participate with us to spread awareness and raise money for Lafora research. [Read more]
We at Chelsea’s Hope wish to thank Toyota Racing for helping us create a beautiful evening under the stars at Chateau St. Jean.
Our “Evening of Miracles” was a true success - thanks to Toyota Racing, Saatchi LA, NASCAR drivers Kyle Busch and Joey Logano and celebrity racer - and new friend to Chelsea’s Hope - William Fichtner. [read more]
2nd Annual Chelsea’s Hope Fundraiser
Chelsea’s Hope 2nd Annual Event on September 26, 2010 raised over $42,000 for Lafora Research. This was made possible due to the kindheartedness and dedication of so many supporters. Whether you participated as a donor, an attendee, or a sponsor, your contribution allows for the continued research in finding a cure for Lafora and we are grateful for your participation and generosity. [Read more]
Thus far, Chelsea’s Hope and YOUR generosity has generated over a quarter of a million dollars for Lafora Research!
With these funds, UCLA hired a dedicated Lafora researcher in addition to forwarding the mice colony studies, which have aided the researchers in obtaining recent FDA approval for the IV Gentamycin therapy.
In addition we have contributed money to the Lafora research being done at the Hospital for Sick Children in Toronto.
$225,000 raised towards our goal for a cure
We are thrilled to inform that in the past 18 months since the inception of Chelseaâ€™s Hope nearly $152,000 has been raised for UCLA research. Families and friends from coast to coast that are connected to Chelseaâ€™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.
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
May 17, 2009
1st Annual Fundraiser
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 Chelseaâ€™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 Chelseaâ€™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 Danvilleâ€™s own â€śHero to the Hudsonâ€ť was Captain â€śSullyâ€ť 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 Chelseaâ€™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!
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.
November 17, 2013
The Ahmed Family Lafora Tragedy
The Sunday Times, U.K.
One of Shekeela Ahmedâ€™s teenage children has died. Her other two will soon follow, as regulations deter research [Read more...]
Funding from Epilepsy Canada brings a cure for Lafora Disease within reach
Dr. Julie Turnbull
Epilepsy Canada has directed its latest funding award toward important research in finding a cure for Lafora disease. Dr. Julie Turnbull, PhD will be completing the work at Torontoâ€™s Sick Kids hospital. [Read more...]
November 17, 2013
Drug firms look away while my children die
The Sunday Times
One of Shekeela Ahmed’s teenage children has died. Her other two will soon follow, as regulations deter research. [Read more...]
July 12, 2013
Italian Association Conversation with Dr. Minassian
Dear Berge, before the usual summer vacation I want to ask if there are any news’ in your research on Lafora disease, in particular:
1) After the negative conclusion on the use of the mouse first molecule identified as an inhibitor of glycogen synthase, how's the experiment, after about 4 months, a dose greater than the first? [Read more...]
January 10, April 14 & September 23, 2013
Dr. Minassian Personal Correspondence
Dear parents and friends who care for Lafora patients,
Each of you as a group or individually asked me for an update. I will not write long, because I explained to all of you our therapy projects. [Read more...]
February 11, 2012
Ferndale Captures Win in Jess Ambroe Classic
The Tribune-Democrat, Johnstown, PA
The listed opponent for Northern Cambria in Friday Nigh’s Laurel Mountain varsity hockey game at Cambria County War Memorial was Ferndale.
What the Reapers encountered was an emotional and purple-clad Jess’ Army.[Read more...]
February 5, 2012
Persons of the Week: Three Ferndale Seniors Carry on Hockey Classic to Help a Friend
The Tribune-Democrat, Johnstown, PA
The Ferndale Area High School hockey team has two goals in mind when it takes the ice Friday night at the Cambria County War Memorial Arena. [Read more...]
The idea of summer camp brings forth childhood memories of beaches and lakes, freedom to play all day, late nights with new found friends, sunburns, boating, hiking, and the excitement to get away from the day to day routine of life. For mothers of severely ill children, the thought of getting away from the rigors of our lives bring forth a bit of daydreaming, “Can I really get away?” Anxiety,“ What if something happens while I am gone?.” and the more practical thoughts of the improbability of it all.[Read more...]
March 8, 2011
NASCAR Racecar Design Contest
To watch the video, click here
March 8, 2011
Johnston Family Hopes Promotion Shines a Light on Rare Disease
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]
October 13, 2010
NA Miss California Ari Eastman at the Chelsea’s Hope Fundraiser
By Megan and Brian Cournoyer
Your Miss California, Ari Eastman, was a celebrity guest and gave a speech during a recent event for Chelsea’s Hope.
May 9, 2010
Purple Day for Jess
“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
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...”
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 ...”
“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]
January 16, 2010
The Hanford Sentinel
by Melisssa 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]
San Ramon Valley Rotary Club
Chelsea Gerber Community Service Project
The San Ramon Valley Rotary Clubâ€™s community service project for Chelsea Gerber began in January, 2010 and will complete in March. Chelsea is a 19 year old girl who has Lafora, a disease that is an extremely rare, inherited form of progressive myoclonus epilepsy syndrome.
“Jess’s Army Joins Chelsea’s Hope”
“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]
“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]
October 1, 2009
“Johnstown teen gains support in fight against rare disease”
The Daily American
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]
“Chelsea’s Hope: Grassroots Effort for a Cure”
Partners in Discovery
UCLA Department of Neurology
“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]
September 18, 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]
September 3, 2009
Conemaugh School of Nursing Fundraiser
Local ABC News interviews about Chelsea's Hope and Lafora
“Rare disease inspires Danville family to share information”
Contra Costa Times
“DANVILLE â€” 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...]
“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...”
“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 â€” or causes â€” of one's choice...”
For more about Sarah and Rachel Kahn’s Charitable Fund: [Read the article]
Katie’s Birthday Bash
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.Â [Read More]
Chelsea's Hope Documentary Movie