Welcome to My Page to Raise Awareness for Periventricular Nodular Heterotopia (PVNH)
I need your help!
I have taken on the challenge to raise much needed funds for PVNH Support and Awareness and ride the Rare Carousel of Possible Dreams. I have taken on this challenge to raise awareness for myself, others living with rare disease and those who have lost their lives too soon because of their rare disease. As you all know I was diagnosed with several rare diseases periventricular nodular heterotopia, pituitary tumor, Ehlers Danlos Syndrome and connective tissue disease. These rare diseases are often easily overlooked and/or dismissed because Dr.'s aren't always properly trained to look for the rare diagnoses, but focus on the more common diseases. It took me over 30 years to find Dr.'s to perform the correct tests and turly listen to my story to put the puzzle pieces together. Even now with my diagnoses none of my Dr.'s have ever heard of PVNH or understand the risks associated with this disease. My dream is for others especially the future generations to not have to fight so incredibly hard to be heard and treated appropriately. There is great importance to educating medical professionals and the general population on these rare diseases to improve diagnosis standards, treatment and make necessary advacements with research. This February with your support, together we can reach my team's goal and help a lot of kids who need our support.
Your gift will make a positive difference in the lives of children and families!
Thank you for all your support every penny counts!
P.S. Please consider joining our team, too, and help us power up our fundraising efforts. Even riding a carousel with your family and take pictures wearing your pink and/or yellow to help spread awareness would be appreciated. Have fun!
Festival of Children Foundation is the fiscal sponsor of this event.