In June 2023 The PHACE Syndrome Community (PSC) is holding their National Conference, the first in person conference since 2018. When we went to our first conference, it was incredible to see Mira get to meet other children with the same rare syndrome that she has, something that some PHACE kids have never gotten to do or only get to do during the conferences. Suddenly they aren’t the only kid that has hemangiomas or that knows what it’s like to have MRIs every year! For me (Whitney) it was an incredible opportunity to talk to other parents going through the same journey as I was. It was a chance to share struggles and feel connected and uplifted by our very small but mighty community.

Because of our priceless experience, we are passionate about making sure that as many PHACE families as possible can have a chance to have the same experience. Unfortunately, conferences cost money to put on and families need to pay a fee to register. That fee along with travel expenses and hotel accommodations is not something every PHACE family can afford, so we decided to start this GoFundMe to create a scholarship fund to help families who want to attend the conference but need a little bit of financial help to make that happen.

Every one of our friends and family have shown Mira SO MUCH support over the years, and we are forever grateful for the love you have given to Mira and our whole family. If you have the desire and ability to do so, we ask you to donate to our scholarship fund. Any amount is helpful, and if you aren’t in a place to share funds we humbly ask that you share this GoFundMe with your friends and family as well.

Having a rare condition or having a child that does can be extremely isolating, and we hope that someday, though the continued spreading of awareness and conferences like these, that PHACE families will not have to ever feel isolated in the future.

Thank you so much for your interest in our community and support for PHACE families, if you would like to learn more about the PHACE Syndrome Community, read below. To learn more about PHACE Syndrome and the research being done, check out our website at: www.phacesyndromecommunity.org

More information about PHACE Syndrome Community: The PHACE Syndrome Community (PSC) is dedicated to supporting those affected with PHACE syndrome and their surrounding family, friends, and community. Through the generosity of the community, the PSC can bring in-person meetings to those who have never met anyone who looks like them. The PSC supports research to find the cause of PHACE syndrome.