Bear-ers of Hope!
February 28, 2018
As part of our patient assistance program, and thanks to generous donations specifically for this purpose, we are able to send Hope home to those bravely living with PCDH19 in the form of a sweet plush bear! Find out more!
PCDH19 Alliance Professional & Family Conference
January 15, 2018
Save the date for June 2018! Registration isn't open yet, but the Alliance does have a block of discounted rooms that will be available, and we will let you know as soon as they are released. The Alliance will also offer a few Patient Assistance Grants again this year, probably for lodging, and will be getting that information out to everyone as soon as possible.
PCDH19 Awareness Day
November 09, 2017
Reaching out to local media and asking them to share your story is important in raising awareness of PCDH19 Epilepsy, PCDH19 Awareness Day and Epilepsy in general. The PCDH19 Alliance has prepared a press kit with resources such as a sample letter to the editor, the PCDH19 Alliance Logo, PCDH19 Epilepsy facts, and a news release. Both media professionals and PCDH19 advocates are welcome to utilize this information.
In particular, sharing your story gives others an inside glimpse into the life of families living with a rare epilepsy and powerfully communicates the urgent need for research toward a cure. Please feel free to use these resources and share them with others.
Laps For Ladybugs
November 04, 2017
Laps For Ladybugs is a fun family friendly walk around the beautiful grounds at San Ramon Valley Elementary in Novato California and Veteran's Memorial Park in Hazlet, New Jersey. All funds raised will support the PCDH19 Alliance, an organization dedicated to improving the lives of indiividuals with PCDH19 Epilepsy.
We invite other families to join us in Nor Cal or New Jersey or contact firstname.lastname@example.org to find out how to start a walk in your own area. Laps for Ladybugs 2017!
Portland Race for the Roses for Kira
April 02, 2017
Kira has been a happy, silly, affectionate, impish and irrepressible child, but she has PCDH19 Epilepsy (Girls Clustering Epilepsy), a rare, severe and devastating seizures disorder which currently has no cure. Since her first seizure at 8 months old, she has had thousands of seizures and many hospitalizations in her lifetime. Through all of this, she has been a generally happy kid who gives the doctors and nurses hugs. But it has taken a toll and she is sad and frustrated more and more as she has become a teenager.
PCDH19 Epilepsy is characterized by early onset seizures (usually beginning between 6 months to 5 years of age) with seizures most often occurring in clusters of seizures that can last from a a day to weeks and are very difficult to stop with medications. The medications have all kinds of negative side effects that affect her quality of life, including some that are potentially life threatening. The medicines can affect speech, learning, appetite, mood, behavior, IQ, continence, balance as well as being hard on the liver and kidneys. And still they don't stop the seizures from coming.
Please support this incredibly generous and wonderful team of runners, and help us help Kira and others affected by PCDH19 epilepsy by making a donation to the PCDH19 Alliance to fund research into better, more targeted treatments for PCDH19 Epilepsy, and eventually a cure. To see the kinds of research that the Alliance has previously funded, check out http://pcdh19info.org/research/ .