Thank you so much for your generosity over the past three years. The PHACE Syndrome Community is two days away from closing its books for 2016. Please support us with a last minute tax deductible donation.
HELP US MAKE A DIFFERENCE FOR PHACE FAMILIES!
The PHACE Syndrome Community (PSC) is completing its third year helping PHACE families and we are asking for your contribution to support our mission. We are very happy to announce that our third conference is in the planning stages now and will take place during the summer of 2018. We estimate the cost for PSC to put on the conference will be $25,000 to $30,000. With your support, PSC can make the conference available to so many of our treasured children and their families for an affordable amount.
Although our community is still very small, with less than 500 participants in the PHACE Syndrome Registry based at the Children's Hospital of Wisconsin, the diagnosis is becoming more widely recognized and utilized. New families have begun to join us monthly due to increased awareness. Your donation will help us sustain and grow our organization and the care for affected families into the future. Our organization is run ONLY by the generosity of our PHACE families and their surrounding families and community. The PHACE Syndrome Community Board and the PHACE Medical Advisory Board are 100% volunteer-run and includes PHACE parents, grandparents, family friends, and prominent PHACE doctors.
March of 2017 will be our third annual International PHACE Syndrome Awareness week. Please stay tuned for details on how you can support PHACE awareness in your local community.
There are several ways you can help us support the community NOW with a donation for your end–of-year tax deductible giving:
- The easiest way is to go to our website and navigate to the Donor page (www.phacesyndromecommunity.org/donate). There you can follow the link to make a donation with your credit card or checking account.
- You may also mail a check to the address above.
- If you are interested in hosting a fundraiser in your area, we have many ideas we can share with you that have been successful, including the RACE for PHACE, dinner party at your house, t-shirt sales, and many more. Please contact us if you would be interested in hosting a fundraising event in your local area. We are here to support your efforts.
We are happy to accept and manage corporate contributions if you happen to work for a company that has an employee matching charitable giving program.
Through the generosity of our supporters and the 1000’s of hours of our generous volunteer’s PSC has:
- Created a Medical Advisory Board of nine physicians from various specialties
- Established a working Board of fifteen members including eleven PHACE family members, three professionals, and one doctor with another dozen volunteers supporting the mission
- Created a professional website with a wealth of information for new families
- Created PHACE Syndrome Awareness Week with Chases Calendar of Events
- Created the Show Your PHACE Campaign and website three years in a row
- Funded and hosted two PHACE Family Conferences – totaling approximately $50,000
- Partnered with Pediatric Dermatology Research Alliance (PeDRA)
- Establish research priorities in partnership with the Medical Advisory Board
- Obtained permission to share the PHACE Syndrome: Consensus-Derived Diagnosis and Care Recommendations from THE JOURNAL OF PEDIATRICS on our website
- Continued our partnership with Rick Guidotti and Positive Exposure
- Manage a very active private Facebook group of parents and families affected by PHACE Syndrome
Each donation is greatly appreciated and will help us make a positive impact on the lives of families facing a future with PHACE. We thank you so much for being part of our mission.
PHACE Syndrome Community, Inc.
Our 2016/2017 Board:
Adriane Baylis – Secretary
Maureen Beckwith - Treasurer
Jerri Lauffer – VP of Outreach
Mary Alice Kaspar – VP of Marketing
Michael Kotyk – VP of Fundraising
Jen Meints – Past President
Jill Salas – President
Dr. Dawn Siegel
Andrew Ziffer – VP of Operations