2024 PHACE Syndrome Community Accomplishments
Member Survey Drives Strategic Plan
September 2024
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Early in 2024, the PSC posted a member survey, which was well received, and many of our families participated. The information that was given by the community was used for the Board of Directors during a strategic plan workshop this past fall. ​
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The areas of priority are to raise awareness of PHACE syndrome, build community for all who are affected, whether they are an adult with PHACE syndrome, or families and extended families affected by PHACE syndrome. Supporting PHACE and LUMBAR research, and the PSC being the key source of medical information and the latest advancements.
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The Board of Directors will address various topics and incorporate them into their committee work. We look forward to the upcoming year and the continued growth of the PHACE Syndrome Community. ​​
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New Resources
September 2024
We are adding to our resources! Visit our School Resource page to find resources on Back-to-School and IEP's.
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Visit our Youtube channel to watch recordings of past lectures and meetings.
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More resources for our families means more informed caregivers.
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PHACE Blog
September 2024
We added a blog to our website! You can find current posts and information from Dr. Denise Metry, as well as inspiring member stories.
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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
Meetings for Families
August 2024
Thank you to our speakers for dedicating the day to the PSC's Virtual Meeting! Our attendees had wonderful sessions to listen to. We all learned so much, and are grateful for the information.
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Thank you to our sponsor, Pierre Fabre.
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The one-day virtual meeting speakers spent the day informing, listening, and answering questions from attendees.
Speakers for the virtual meeting:
Dr. Mitchell Braun, Ann Buneo, PSC Board Chair, Dr. Beth Drolet, Dr. Ilona Frieden, Dr. Elizabeth George, Dr. Anna Kerr, Dr. Denise Metry, Dr. Darren Orbach, Alyssa Ponce, MS, CCLS, Dr. Dawn Siegel, Dr. Rachel Vassar​
The PSC secured a meeting location for the in person Family Conference for 2025!
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We hope to see many families at our in person Family Conference in Boston, MA on June 20-21, 2025!
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The Conference Committee is meeting to plan the best conference for 2025! Stay tuned for updates!
Thank you Jill Salas
June 2024
Your many years of dedication to the PHACE Syndrome Community is very appreciated!
Jill's Board of Director term is now ending, but the work she has done as a founding member of the PSC continues.
Through her vision, hard work, and determination, the PSC is now a thriving organization, educating, supporting and serving over 1,000 individuals!
Jill has helped countless of families through their personal journey with a PHACE diagnosis, all while she was helping her own daughter overcome barriers and challenges, and guiding her to become the amazing young adult she is today.
Volunteering is often considered a "thankless" job, but at the PSC, we are more than thankful for Jill Salas and the path she has created for future board members and the organization.
Welcome New Board Members
June 2024
The PSC welcomes two new board members to the organizations!
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Dr. Denise Metry, Houston, TX
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Dr. Metry is an academic pediatric dermatologist who has practiced in Houston, Texas for more than 20 years. She developed a passion for vascular birthmarks, especially infantile hemangiomas, early in her training. She is a founding member of the Hemangioma Investigator Group with whom she has engaged in collaborative research resulting in >100 publications. Some of her career highlights include organizing the first PHACE Syndrome research and family meeting in 2008, which resulted in diagnostic criteria for the syndrome and began the PHACE Syndrome Community. She also recently led an expert consensus to establish diagnostic criteria for LUMBAR syndrome.
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Erin Perry, Woodridge, IL
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Erin is a Board-Certified Registered Nurse Care Manager working at Advocate Good Samaritan Hospital in Downers Grove, Illinois. She works on all inpatient units and the emergency room coordinating care, educating patients and caregivers, advocating for patients and connecting them with resources they need to stay well after discharge.
Erin hopes to raise awareness about PHACE Syndrome and the PSC and support patients and families affected by the rare Syndrome. Their family has seen first-hand the lack of knowledge about the syndrome and different symptoms associated with it. She hopes to have an active role in advancing the knowledge of symptoms, diagnosis, and treatment to improve care for their son Connor as well as all others affected.
The PSC Attends Meetings in Washington D.C.
May 2024
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The Pediatric Dermatology Research Alliance (PeDRA) organized a meeting to the National Institutes of Health (NIH) and the United States Food and Drug Administration (FDA).
The PHACE Syndrome Community accepted an invitation to attend the meeting to speak on behalf of all families and individuals with PHACE syndrome. Moureen Wenik, PSC's Community Program Manager, along with two other patient organizations, Gorlin Syndrome and Global Parents for Eczema Research, and PeDRA Patient Advisory Chairwoman were there to represent the needs of patients. They were joined by Mike Siegel, PeDRA Executive Director, and the PeDRA Board of Directors to discuss the importance of the NIH, and the role they play in the rare disorder space.
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Describe your image
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​​The group met with Lindsey A. Criswell, M.D., M.P.H., D.Sc.  Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) , and multiple other NIH institutes to discuss the burden of rare syndromes and disorders on families and patients who are living with their disorder. Discussion ranged from the need for funding for research to mental health challenges of patients, as well as the roadblock many patient's face with access to knowledgeable physicians and misdiagnoses.
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The FDA meeting was held with dermatologist Dr.Jill Lindstrom, Director, Division of Dermatology and Dentistry. This meeting included the importance of patient centered outcomes in research, and the need for FDA approval for off-label therapeutics, allowing insurance companies to cover the prescribed drug, but most importantly for patients to have ease of mind when being prescribed a known medicine to help them.
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The PeDRA Corporate Council, which was established as a step towards harmonizing goals and providing mutual benefit for all stakeholders in the pediatric dermatology space, had a meeting on Monday afternoon. The meeting was a collaborative session to determine how PeDRA can best serve physician scientists, patient groups, and and corporate partners.
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The PSC looks forward to continued collaboration with PeDRA and all the stakeholders they serve.
The PSC Joins GlobalSkin
​At the end of 2023, the PSC became a member ​of The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin). This organization is a unique global alliance, committed to improving the lives of patients worldwide. They nurture relationships with members, partners and all involved in healthcare - building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin's work is founded on three pillars: research, advocacy and support.
The PSC looks forward to bringing more resources to our PHACE and LUMBAR syndrome community.
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