Virginia
September 15, 2024
6601 Telegraph Rd Alexandria, VA 22310
The Race for PHACE, an annual walk/run was formed in Pittsburgh, PA in 2013, by a group of parents who wanted to raise money to support the PHACE Syndrome Community. (PSC).
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This event, in the Virginia area, is being organized by Jeannie Fuglesten Biniek.
For more information contact Jeannie at jeanniebiniek@gmail.com
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​Read why this event is important to Jeannie
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The PHACE Syndrome Community has been an incredible resource and source of support for our family. PHACE syndrome is the association between large facial hemangiomas ("H") and differences in the posterior fossa ("P"), abnormalities of the arteries of the head and neck ("A"), cardiac abnormalities ("C"), and eye anomalies ("E"). "S" is also sometimes added to the acronym and stands for sternal differences or supraumbilical raphe.
Most people are not affected by all of the letters. It is an extremely rare condition and it can be very difficult for families to navigate, because for most people it requires not only finding an interdisciplinary team to provide care, but also educating those providers on the standard of care.
We are organizing a Race for PHACE event to support the PHACE Syndrome Community.
Some examples of the work this organization does includes:
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Organizing a family conference to bring together families and doctors from around the country and keep the cost of the conference affordable.
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Supporting the PHACE Syndrome Registry at Stanford University to provide researchers with data to examine the risks and benefits of treatments and work to uncover a cause. Managing an online community providing support to over 900 members.
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Hosting Zoom sessions with doctors and other experts to provide those affected by PHACE with important information and updates.
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Reaching out and educate specialists working in vascular anomalies centers and with PHACE patients about PHACE, treatments and care.
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Meet Auri
​Auri was born with a supraumbilical raphe (a line between her sternum and belly button), which led the NICU doctor to suspect PHACE. This was fortunate for us (though admittedly terrifying) because it allowed us to know what to look for and get connected to doctors at Children's National Hospital.
At about three weeks old, red spots that she was born with along her jaw and lip started to get darker. Her pediatrician confirmed they looked like hemangiomas and recommended that we see the vascular anomalies team at Childrens.
After a visit with the pediatric dermatologist and an MRI, her PHACE diagnosis was confirmed (she has H, A, and S).
Just shy of 5 weeks old she was able to start oral propranolol, which prevented the hemangiomas from growing larger and causing feeding or breathing problems. The dermatologist also told us about the PHACE Syndrome Community. This allowed us to connect with other families to understand what the next year and beyond might look like, questions to ask, and learn how to get second opinions from doctors more familiar with PHACE.
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.
About the Event
What is a Race for PHACE?
The race for PHACE is a run or walk organized to raise awareness for the PHACE Syndrome Community, the funds raised are used to support research, and help families with a PHACE syndrome diagnosis. The organization is the only patient support organization in the world supporting families and individuals with PHACE syndrome and supporting research.
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What events are available to participate in the Virginia Race for PHACE?
There is either a 1/2 mile fun walk through Chessie's Trail, or you can participate virtually.
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Is there a rain date?
The event will still take place in the event of light or moderate rain. If the race has to be cancelled for any unfavorable weather you will receive an email notification by 7:30AM, September 15th.
The event will not be rescheduled. Your registration fees will not be refunded and will be considered a donation to the PHACE Syndrome Community.
In Person Event Location and Time
When is the Race for PHACE held?
September 15, 2024
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Where is the event held?
Chessie’s Trail - 1/2 mile fun walk
Franconia Family Recreation Area
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What time does the event begin?
Check-in begins at 9:00 am.​
Please do not leave valuables in your car.
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Virtual Event
For individuals who are unable to attend the event in person, please join in the fun virtually! You can walk or run at your pace, in the venue of your choice. Click here to register to participate virtually. ​​
Event Registration Information
What is the registration fee?
$30.00 pp for adults
$15.00 pp for children 12 and under
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How can I register?
Register and pay using this link
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Can I register my entire family to participate in the Race for PHACE?
Yes! Using this registration form, you can register your entire family.​
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Is there a rain date?
The event will be not be rescheduled if canceled due to rain. The registration fee will not be returned, as this is a donation to the PHACE Syndrome Community. In the event of cancellation due to poor weather conditions, an email will be sent to the person who registered for the event. Notice of cancellation will be made on the morning of September 15th, and a notice will be posted on this webpage as well.
PHACE Syndrome Community Sponsor Information and General Donations
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Consider becoming a sponsor and supporting the PHACE Syndrome Community; use the registration form to become a sponsor
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Platinum level $250
Gold level $100
Silver level $50
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Click here to make your general donation to the PHACE Syndrome Community.
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Your sponsorship or general donation will be used to support the mission of the PHACE Syndrome Community.
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Does your company want to become a sponsor?
Contact Moureen at mwenik@phacesyndromecommunity.org to learn more about company sponsorship and matching gifts for the Race for PHACE
Share Your Event on Social Media!
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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
Questions about the PSC?
Contact Moureen at mwenik@phacesyndromecommunity.org
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