June 17th is International CDKL5 Day

 

June 17th is International CDKL5 Day. During the month of June let’s tag every day with a reminder to those in the CDKL5 community to promote collaboration and fundraising. research, and awareness.

A very special mother-and-daughter team will be helping to create awareness. Kiera was diagnosed with CDKLS in 2008 and since then, Katheryn, a physician, spends each day making her daughter’s life better and brighter.

In 2008 there were no data or potential treatments for CDKL5 disorder. Katheryn created a “Roadmap to a Cure” and co-founded the International Foundation for CDKL5 Research.

Katheryn would like people to know that they can show their support and raise awareness in businesses, schools, cities, and local communities.

About Cycline-Dependent Kinase-Like 5 (CDKL5)

CDKL5 is a rare neurological disorder characterized by treatment-resistant seizures beginning in the first few weeks and months of life. Most children with the disorder are unable to feed themselves, nor are they able to talk, walk or care for themselves.

CDKL5 is crucial for normal brain function. Children with the disorder are deficient in this protein. There are several thousand such cases in the world.

In addition to providing support and raising awareness, one of the many goals of the CDKL5 Foundation is to provide education to families and to improve lives now.

Donate and Join the Cause

As an all-volunteer organization, we have made a commitment to provide transparent use of donations with minimal overhead.

Your trust will be met with projects that make a difference, hard work, and accountability.

You can donate directly or through philanthropic websites.

More information is available here.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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