Take the Birthday Pledge
Help us raise funds to create awareness, move research forward, and help our special kids live great lives with a monthly BIRTHDAY PLEDGE for 12 months.
It works like this: If the PHACE child is 10 years old, make a $10 dollar donation per month for 12 months (the cost of a couple of lunches). Of course you can make a larger donation and we welcome those. The donation is made in honor of the child (or adult affected with PHACE). Remember that the PHACE Syndrome Community is still a small community and the more the community supports our group, the more resources will be available to care for the special children via awareness and research.
Fundraising will also support our next conference, which will take a minimum of $20,000 to organize. Our PHACE-affected kids can also have some fun in the process and be recognized for their efforts.
Photovoice is a collective storytelling process in which people use photographs to describe their environment and experiences and to express their thoughts about them. The goal of this project is to use photos to learn more about the experiences of individuals affected by PHACE Syndrome.
If you choose to participate, you and/or your child will take photos that represent what it is like to live with or care for someone with PHACE Syndrome. What you take photos of is entirely up to you! Your photos might answer these questions:
What is it like to live with or care for someone with PHACE?
What do I want to tell other people about PHACE?
What do I wish my or my child’s doctors knew about living with PHACE?
How does PHACE affect me or my child at places like home, school, or work?
What are my hopes for my or my child’s future?
With your permission, the photos collected for this study will be displayed on the PSC website and social media pages.
Here are a few examples of Photovoice projects like ours:
You will be receiving an e-mail soon with more information and a link to sign-up for the project. All participants will be invited to attend a virtual information session via Zoom on May 27 at 8:00 pm eastern time.
This project was approved by the Ohio University Institutional Review Board [20-X-43]