2024 Race for PHACE Recap!
Three families, three ways to host an event. Thank you to everyone who organized, participated and supported the events. Read more about our dedicated families.
Ryan Perry, a high school freshman, located in Chicagoland, organized a 5K as part of his Eagle Scout Project. His brother Connor, has PHACE syndrome, bringing a deep meaning to this project. Ryan spent months organizing the event., and served on the Race for PHACE committee. His leadership was evident from the very first meeting. Ryan chose to organize his event at a state park. He solicited donations from local vendors, and sponsors to help his event be a success. His Eagle Scout project focused on bringing awareness about PHACE syndrome to his community. To accomplish this, Ryan had informational signage throughout the course, educating runners and walkers along the way. His event had a great turnout of volunteers, and participants. Ryan raised over $5,000! Way to Go Ryan!
"I have seen the rarity of the syndrome and struggles with diagnoses, treatment, and others understanding of it. Because of this I want to help raise awareness for PHACE syndrome and the PHACE Syndrome Community with my project." - Ryan
In Virginia, Jeannie Fuglesten Biniek and wife Jayme, gathered with family and friends at a local park. This is the second year the Fuglesten Biniek family planned a Race for PHACE event! As daughter Auri grows, they will continue to plan events that are age appropriate for Auri and friends. This year, Auri and her friends played and explored through a 1/2 mile fun trail. Jeannie serves on the PHACE Syndrome Community Board of Directors, and is passionate about supporting the PSC. She and her wife turned to the PSC when Auri was diagnosed. With the support of friends and family, they raised over $3,700. The PSC appreciates you Jeannie!
"Auri is doing fantastic, and her mama and mommy are doing well too, largely because of this support. Now that we feel a bit more comfortable, we want to make sure the organization has the resources to continue to provide the type of support we received to others." - Jeannie
The Spencer family from Buffalo, NY took a different spin on Race for PHACE this year. A previous Race for PHACE organizers, they decided to gather with family and friends to create awareness and raise money for the PSC. They hosted friends and family at their local brewery, Fattey Beer Co. The team known as Cal’s Pals, named for son Callan, had a wonderful time, and even caught the glimpse of a rainbow during their event! Their event raised $500! Thank you Spencer family!
"The PHACE Syndrome community is an invaluable resource and support system to our family. From the first (terrifying) weeks to now, 2 years post-diagnosis, the community has given us so much: Education, advice, doctor recommendations". - Kim
The Race for PHACE started in 2013 by families in Pittsburgh, PA and has raised over $130,000! We continue this fundraising event, and look forward to more families, across the country, hosting a walk or run.
Families across the country can organize teams of friends and family to walk or run. Past events have been races through a timed course, a walk through a park or neighborhood, or even individuals getting sponsors and running on their own! Hosting a virtual event, and asking friends and family from near and far to walk or run with you on a certain day, is another great way to host a Race for PHACE.
All the different ways an event is organized, creates awareness for PHACE syndrome while supporting the programs of the PHACE Syndrome Community.
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Will you create a team for the 2024 Race for PHACE?
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Grab your friends, and walk or run through your neighborhood, park or local track.​
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Watch Jeannie talk about her passion for the Race for PHACE!
The 11th Annual Race for PHACE Walk and Run
You can organize in your own neighborhood, set-up a live race, or encourage friends and family to participate through a virtual event...you can decide!
Set your course, your pace, and even your distance.
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Participate alone, or ask your family and friends to join you in person or virtually.
Read more about how to plan for your event.
What is a virtual race and walk?
Rather than meeting in a physical location, with other event participants, a virtual race or walk is an event where you participate in your location while friends and family are at their remote locations.
When is the Race for PHACE held?
The Race for PHACE will be held during the week of September 7-15, 2024. We encourage you to host your Race for PHACE event during the designated week, or plan your event during a time that works best for you and your family and friends.
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How do I become a team captain, and host an event?
To become a team captain, use this form to register your team, and plan to attend the team captain's meeting on May 28th. Once your team is registered, you can start to promote your event. Registration for all team members and individuals wanting to participate will begin on June 1, 2024.
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Can I register my entire team members to participate in the Race for PHACE?
Yes! Create a team with your friends, family and coworkers, and fundraise together! Registration opens on June 1, 2024.
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Can I register under a specific team name?
Beginning June 1, 2024, the registration form will contain a dropdown box with all registered teams. Only teams that have been registered will be included in the dropdown. If you don't see the team you want to join, contact the team captain. Registration and payment will be accepted beginning June 1, 2024. ​
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Is there a minimum fundraising requirement?
There is no minimum fundraising requirement. Each participant is asked to register, and there is a registration fee of $30 for an adult, and $15 for a child.
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Is the registration fee?
$30.00 pp for adults
$15.00 pp for children 12 and under
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Become a Race for PHACE Sponsor
A sponsor of this year's event helps the PSC support more families; make your sponsorship using this link.
Platinum level $250
Gold level $100
Silver level $50
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Want to make a donation, but don't want to register to run or walk?
If you are making a donation on behalf of a specific team, use the dropdown box to chose your team.
Fill in your contact information and address.
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Share and post your event.
Use #RaceforPHACE to share the event on social media
Email pictures and video to raceforphace@phacesyndromecommunity.org
Does your company match your donations?
Contact Moureen at mwenik@phacesyndromecommunity.org to learn more about company sponsorship and matching gifts for the Race for PHACE
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Questions?
Contact Moureen at mwenik@phacesyndromecommunity.org
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