PCDH19 Moms

Moms of kids with PCDH19 are often fierce advocates, medical managers and public educators.  First and foremost though, we are moms. We celebrate our children's victories and mourn their heartaches. We cuddle our kids in the middle of the night and kiss boo boos.  In honor of Mother's Day, we asked some of our PCDH19 moms to share their favorite memories with their children.  Their stories are below. Julie "If I knew this would be one of the last times she would experience our

May 3rd, 2017|0 Comments

Another Year in Holland: Life as a Parent of a Child with PCDH19

The decorations are put away, the ball has dropped, kids are heading back to school and parents around the world are officially starting another year in Holland. I’ve never actually been to Holland but I’ve lived there for the past four years. Holland is the country of parents of children with special needs. In 1987, Emily Perl Kingsley wrote a poem titled Welcome to Holland that described her life as a mom to a child with special needs. She said it was like taking off

January 9th, 2017|0 Comments

On Becoming an Epilepsy Advocate

Years ago, when we were just starting on our journey with PCDH19, someone suggested that I work to raise awareness about epilepsy and Alyssa’s condition. At that point in my life, I was pretty mad at the world and I found suggestion that I become an advocate infuriating. I was fully aware of how this disorder was destroying our lives and stealing my child. I saw no point in making others more aware of our tragedy.  More people clicking like on a Facebook photo wouldn’t

November 3rd, 2016|0 Comments

Dear Parent: It’s OK to be where you are.

  When my daughter received her diagnosis of PCDH19, I fell apart.  I had days when I couldn’t get out of bed and times when the grief seemed overwhelming.  I write about this now because at the time I thought that I was alone.  I looked at the special needs moms that I knew, or the ones I saw online, and I was convinced that they were all superwomen. They were out and about raising awareness or changing laws. They seemed to juggle the endless

September 29th, 2016|0 Comments

Preparing for another (school) year with epilepsy

Preparing for another (school) year with epilepsy: Five tips to make this your best year yet By Le Shepard In the next few weeks, many of our kids will be heading off to school. This can be a stressful time for any family but especially so when you have a child with special needs. We have all heard horror stories, and some of you may have even lived them, about the IEPs that are not followed and schools who do not provide the education our kids deserve.

August 9th, 2016|0 Comments

2016 PCDH19 Epilepsy Symposium

Welcome to the 2016 PCDH19 Epilepsy Professional & Family Symposium.  We know that not every family facing PCDH19 Epilepsy is able to join us in San Francisco this weekend.  The best way to keep up with the conference from afar is to watch the sessions online.  The second best way to learn about the newest breakthroughs is to follow along here. I’ll be live blogging and summarizing the points that stick out to me as a parent.  I’m not a medical doctor so please don’t

June 4th, 2016|12 Comments

The PCDH19 Alliance 2015 Annual Report

We are excited to share The PCDH19 Alliance 2015 Annual Report.   Our PCDH19 community may be small in number, but look what we accomplished together towards our common goal. Thanks to everyone that joined us in our mission last year. We are off to a great start this year. Now is a great time to get active and and join is in our mission for 2016! Click here to get the report.

March 24th, 2016|4 Comments

2016 Research Grant Cycle is Now Open

Calling all Researchers and Clinicians Interested in PCDH19 Epilepsy!  Our 2015 Research Grant Cycle is Open!  2015 Grant Cycle Dates: Submission Deadline: May 1st 2016 Awards Announced: September 1st 2016 Please email Julie Walters with any questions:

February 19th, 2016|0 Comments

Marinus Officially Announces Ganaxolone Trial For PCDH19

We are so excited and hopeful to be able to officially share this news: MARINUS PHARMACEUTICALS INITIATES CLINICAL TRIAL WITH GANAXOLONE IN PCDH19 FEMALE PEDIATRIC EPILEPSY RADNOR, PA, February 3, 2015 (Globe Newswire) -- Marinus Pharmaceuticals, Inc. (Nasdaq:MRNS), a biopharmaceutical company dedicated to the development of innovative neuropsychiatric therapeutics, announced that it has initiated a Phase 2 clinical trial with ganaxolone, a synthetic analog of the endogenous neurosteroid allopregnanolone, in female children with epilepsy caused by a mutation of the protocadherin 19 gene (PCDH19). PCDH19 female pediatric

February 3rd, 2015|0 Comments

The PCDH19 Registry Is Now Enrolling!

We are excited to announce that the PCDH19 Epilepsy Registry is now open. Thank you to the teams at Boston Children's Hospital and UCSF for all of their hard work on this Registry thus far and thank you to all the friends of the Alliance, without your generous support this registry would not have been possible. Click here for more information and to enrol.   

October 6th, 2014|0 Comments