BENEFITING: Charities Aid Foundation America
ORGANIZER: Micah and Beth
EVENT DATE: Sep 18, 2016
Micah and Beth Florea wrote -
We humbly ask for your support to join our cause as we help fund research to develop a drug treatment that can reverse the effects of Kleefstra Syndrome (“Kleefstra” or “KS”) and other intellectual disability disorders. Together, we can ensure critical research advances with the goal to improve the lives of Kleefstra individuals and their families, as well as many others affected by similar intellectual disability disorders, including many with Autism Spectrum Disorder (ASD).
After years of unanswered questions regarding our 6-year old son’s health and development, Logan finally received a genetic diagnosis of Kleefstra Syndrome in October, 2015. He has a micro deletion within the EHMT1 gene on the 9th chromosome. Although Logan can be quite social, curious, and smiley much of the time, this small genetic mutation has a significant impact on Logan’s life. His challenges include Apraxia of Speech, severe sleep disturbances, Autism Spectrum Disorder (ASD), Attention Deficit Disorder (ADHD), Anxiety Disorder, aggression, fine and gross motor delays, and delayed toilet training, among others. For a more complete picture of how Logan is affected by Kleefstra Syndrome, please see a recent update about Logan at https://db.tt/ZdeO02DR.
We have attempted to manage the symptoms of Logan’s condition with intensive therapy and medications, but he still remains agitated and trapped inside a body that fails him and revolts against him on a regular basis. In addition, the prognosis for individuals with Kleefstra Syndrome through the age of puberty isn’t positive: Schizophrenia-related psychotic episodes, extreme insomnia, and loss of basic skills. No Kleefstra adults are known to live independently or be able to provide much self-care. There is currently no treatment for Kleefstra Syndrome.
Fortunately, science is at a phenomenal point of discovery – scientists understand the basic mechanism of Kleefstra Syndrome and may be able to treat it at the cellular level, addressing the root cause of the symptoms. We and other Kleefstra families around the world are partnering with GeneSpark.org, an international foundation, to raise awareness of Kleefstra Syndrome and to raise funds to support the research and development of a treatment for Kleefstra Syndrome, as well as for other similar reversible intellectual disabilities, including certain causes of autism. GeneSpark.org has established an experienced Scientific Advisory Board (SAB) to guide its research funding and is currently working with world-renowned research scientists on three key research projects. In order to complete these projects, additional funding will be required.
Please consider supporting our efforts to raise awareness and advance research that could give Logan and many others a more hopeful future in the following ways:
- Join us for our first annual Kleefstra Walk and Roll event on Sunday, September 18th at 3:00pm at Walla Walla Point Park, Shelter #2 in Wenatchee, WA. We will walk a short course together with Logan, enjoy root beer floats, and have opportunities to learn more.
- Donate by clicking the link above that says “Donate to this fundraiser”. After donating, click to share it on your social media pages!
- Pass this information on to friends and family that may be interested in learning more and being a part of this important cause
- By clicking on the link above that says “Fundraise for this Campaign”, you can set a goal to help raise funds within your own network. You can include a personal message and quckly and easily share it on your social media pages. This will help maximize the reach of our fundraiser!
Please visit www.GeneSpark.org for more information about research on Kleefstra Syndrome, intellectual disabilities, and ASD.
We are so thankful for your support and the hope it brings to our precious Logan and to our family!