Running for The Cute (PCDH19)
Donation protected
I'm running like a Diva on October 5th to raise money and awareness for The Cute Syndrome Foundation*, and I need your help.
The Cute Syndrome Foundation's mission is to fund research, facilitate treatment, and raise awareness of rare genetic disorders relating to epilepsy, hypotonia, and developmental delay.
The ridiculously cute face you see on this page is the face of The Cute Syndrome, and my inspiration for running. Esmé is the bravest little person with the biggest heart you could imagine. She takes on every challenge life has offered her with joyful determination.
The Cute Syndrome Foundation's mission is to fund research, facilitate treatment, and raise awareness of rare genetic disorders relating to epilepsy, hypotonia, and developmental delay.
At the moment, the fundraising efforts are focused exclusively on research into, diagnosis of, and treatment for PCDH19 Female Limited Epilepsy (FLE), also known as EFMR, a disorder caused by a genetic mutation on the PCDH19 gene.
There are a relatively small number of cases of PCDH19 FLE confirmed by genetic diagnosis in the world, but we suspect this to be more widespead and we've got to get the word out so researchers can identify root causes.
While Ezzy can't join me to run this 5K, I'm going to take her strength with me and we're going to rock this like the divas we are.
The "Cute" is Contageous...please consider catching by supporting me with a donation to this incredible foundation.
*The Cute Syndrome is registered as a tax-except organization under IRS section 501(c)(3).
Its tax identification number is: 46-2699066
The Cute Syndrome Foundation's mission is to fund research, facilitate treatment, and raise awareness of rare genetic disorders relating to epilepsy, hypotonia, and developmental delay.
The ridiculously cute face you see on this page is the face of The Cute Syndrome, and my inspiration for running. Esmé is the bravest little person with the biggest heart you could imagine. She takes on every challenge life has offered her with joyful determination.
The Cute Syndrome Foundation's mission is to fund research, facilitate treatment, and raise awareness of rare genetic disorders relating to epilepsy, hypotonia, and developmental delay.
At the moment, the fundraising efforts are focused exclusively on research into, diagnosis of, and treatment for PCDH19 Female Limited Epilepsy (FLE), also known as EFMR, a disorder caused by a genetic mutation on the PCDH19 gene.
There are a relatively small number of cases of PCDH19 FLE confirmed by genetic diagnosis in the world, but we suspect this to be more widespead and we've got to get the word out so researchers can identify root causes.
While Ezzy can't join me to run this 5K, I'm going to take her strength with me and we're going to rock this like the divas we are.
The "Cute" is Contageous...please consider catching by supporting me with a donation to this incredible foundation.
*The Cute Syndrome is registered as a tax-except organization under IRS section 501(c)(3).
Its tax identification number is: 46-2699066
Organiser
Wendy David
Organiser
Dobbs Ferry, NY