International Foundation for CDKL5 Research (IFCR) Announces

2nd International CDKL5 Family Conference

“Opening doors to discoveries… Hope is the Key”

 

WADSWORTH, OHIO, February 20, 2014 –The International Foundation for CDKL5 Research (IFCR) is pleased to announce its Second CDKL5 Family Conference to be held from June 26 through June 28, 2014, in Chantilly, Virginia, at the Westfields Marriott Washington Dulles.  The conference is entitled, “Opening Doors to Discoveries… Hope is the Key.”

 

A CDKL5 Disorder is a devastating genetic condition that usually presents in the first few months of a child’s life, causing seizures that are refractory to known treatments, limited physical development, severe neurological impairment, vision problems, autism spectrum disorders and gastrointestinal problems.

 

IFCR is committed to collaborating with leading scientists and researchers from around the world who are dedicated to finding a cure for CDKL5.  Immediately preceding the Family Conference, there will be a two-day scientific conference where some of the top doctors and researchers in their respective fields will be presenting on the latest research.

 

The 2nd International CDKL5 Family Conference will be held in conjunction with the International Rett Syndrome Foundation’s (IRSF) 30th Annual Family Education and Awareness Conference.  While Rett Syndrome and CDKL5 Disorders are each a distinct and separate disorder, those affected by either disorder have some similar symptoms and challenges, and the gene responsible for each condition are thought to affect one another.

 

“We are proud to co-host this year’s annual family conference with the IRSF in the spirit of hope and discovery,” said Katheryn Elibri Frame, IFCR President.  “We look forward to a revitalizing experience where families can support one another and interact with medical and scientific professionals who are working toward treatments and cures for these tragic disorders.”

 

CDKL5 Disorders and Rett Syndrome are both rare diseases, meaning that each affects fewer than 200,000 people.  Funding for new treatments of rare diseases is very limited so it is beneficial to each organization to pool resources and capitalize on research opportunities when possible.  The blending of the two communities is a mutually beneficial collaboration and there will be several joint sessions of common relevance.

 

The Second CDKL5 Family Conference will feature renowned experts from the fields of genetics, neurology, gastroenterology, physical therapy, occupational therapy, and vision who will speak on topics of concern to the families and caregivers of those afflicted with a CDKL5 Disorder.  In addition to addressing the medical condition, sessions on broader topics will also be offered, such as navigating the new medical insurance landscape, preparing for the future with regard to wills and trusts, and advocating for children with special needs in schools.

 

To register online for the conference, please visit www.cdkl5.com/News-Events/EventRegistration.aspx.

To book your hotel room at an AMAZING rate of just $89 per night, please visit https://resweb.passkey.com/go/FamilyConferenceBlock

 

Contact: Katheryn Elibri Frame, DO, President, IFCR

Mobile: 630-926-1189  Email: keframe@cdkl5.com

 

For more information about IFCR or CDKL5 Disorders, please visit : www.cdkl5.com.

 

Click here for PDF of press release