Copy
View this email in your browser
December 2014

Greeting PSC supporters!

The PSC has had a very busy last few months and we are quite excited about everything going on in this organization. New volunteers have joined and our committees are actively working to keep the great work going.

Here are some highlights from the PSC:

 
PeDRA Conference

In early November, Jennifer Meints and Jill Salas from The PHACE Syndrome Community traveled to Chicago, IL for the second annual PeDRA Conference. They presented a poster about the organization and its research priorities to a group of over 100 Pediatric Dermatologists, researchers and scientists. This is the second year the PHACE Syndrome Community has participated in the research conference. We are excited to have the opportunity to create additional interest in PHACE research as well as meet several of the doctors who have been involved in PHACE research for many years.

Activeboard is up and running!
 
We have re-launched our private bulletin board. This was once the community's primary way to communicate, reach out and help one another. When Facebook came along, many people migrated to the Facebook private group. We are re-launching an updated private bulletin board for a number of reasons, the main ones being:
 
• Some people are uncomfortable posting too much on Facebook over privacy concerns.
• The format of the private bulletin board tends to better lend itself for more in-depth      conversations.
• The format of the private bulletin board better lends itself to conversation archiving and searching of prior discussions newer families may have missed.

Individuals with PHACE, their parents or primary caregiver are all invited to join. We also have created a private section for adults diagnosed with PHACE.
 Please email Cristina at phacesyndromecommunity@gmail.com to establish your access.
http://phacesyndromecommunity.activeboard.com/


 

Join the Registry!

If you or your child has been diagnosed with PHACE, please consider joining the official registry to help with ongoing research on PHACE Syndrome. This registry, hosted by Dr. Siegel,  is the ONLY international registry. To read more about the research Dr. Siegel and her team is doing, follow this link, http://www.wauwatosanow.com/userstoriessubmitted/264562551.html.
 
If you have not already joined, please visit http://www.chw.org/medical-care/birthmarks-and-vascular-anomalies-center/conditions/phace-syndrome/phace-syndrome-registry/ for information on how to join.

 
HELP US MAKE A DIFFERENCE FOR PHACE FAMILIES!
 
Help us raise funds to create awareness, move research forward, and help our special kids live great lives with a monthly BIRTHDAY PLEDGE for 12 months.
 
The PHACE Syndrome Community has recently added a new way to help raise funds.  A reoccurring monthly donation option is now available and we are giving kids, their family, and their community, the ability to help.
 
It works like this:  If your child is 10 years old, make a $10 dollar donation per month for 12 months (the cost of a couple of lunches) via our website.  Of course you can make a larger donation and we welcome those.  You, your child, and/or your family can then ask your community (friends, co-workers, family members) to do the same in honor of your child (or adult affected with PHACE).  We will provide you with pre-scripted emails or Facebook shares you can use and personalize for your efforts to help raise donations for PSC.  Remember that we are still a small community and the more the community supports our group, the more resources will be available to care for our children via awareness and research.
 
Fundraising will also support our next conference, which will take a minimum of $20,000 to organize.
 
Our PHACE-affected kids can also have some fun in the process and be recognized for their efforts.
 
1) The family with the most donors wins a new Android Tablet (for the PHACE child, not you mom and dad) (or $150 Target Gift Card).
2) The family with the second most donors can pick a Lego set of their choice up to $75 (or a $75 Target Gift Card).
3) The family with the third most donors gets a digital camera (or a $50 Target Gift Card).
4) All PHACE families with donations of $100 or more for the year get a PHACE t-shirt.
 
If you, your family, or your friends are looking for a way to help us make a difference, please donate and encourage your community to do the same.  Visit our website to donate.  Your monthly donation is made in the name of your loved one.
 
 
Each donation is greatly appreciated and will help us make a positive impact on the lives of families facing a future with PHACE.
 
(NOTE:  All PHACE Syndrome Community, Inc., Board Members are excluded from prizes, but will actively raise money through their communities.  Prizes will be announced based on donation commitments created on or before February 28, 2015.)
 
Thank you,
 
Jennifer Meints
President
PHACE Syndrome Community, Inc.

T-Shirts! Get your T-Shirts!

Another way to help support our community is to purchase your own PHACE Syndrome Community t-shirts. They would make great gifts for the upcoming holidays!
Purchase your t-shirts to help support the PSC and spread awareness of PHACE.  To check out what is available and to order your shirts, please visit our website at http://www.phacesyndromecommunity.org/#!shop/c1lw0.

 
See more site updates at: www.PhaceSyndromeCommunity.org