M Magazine Patients of Courage - Page 42

November, 2014

 

Read about Morgan Glodowski from our PHACE Community.  She is now 22.

http://www.mydigitalpublication.com/publication/?i=229899

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THANKS TO ANN SINGH FOR SUPPORTING THE PHACE SYNDROME COMMUNITY

April 4, 2014

 

The community greatly appreciates the generosity of Ann Singh, whose company will be donating 20% of their sales to support PHACE Syndrome.

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EXCITING NEWS - First Annual PHACE Awareness Week

March 13, 2014

 

Please join The PHACE Syndrome Community, Inc. and the PHACES Foundation of Canada in celebrating our first annual International PHACE Syndrome Awareness Week, March 23rd through March 29th.

 

We would LOVE your support in helping to raise awareness especially during this week in order for our cause to be recognized in the official publication of Chase's Calendar of Events (this is how every great cause gets officially recognized).

 

What do you need to do? Nothing other than find a way to spread the word! Education and awareness is our GOAL for this week! How can YOU do that? Speak to your child's classroom or school about PHACE, ask your school nurse if you can make a poster to hang in her office, visit your favorite doctor and give them a PHACE t-shirt and a flyer for them to post at their office or send to their colleagues, take a picture of your family wearing their PHACE t-shirts and post it on your Facebook page along with the links to the PHACE website's, have a PHACE party or if you feel like participating in a PHACE fundraiser, join the RACE for PHACE in PA http://www.raceforphace.org/ or Brooklyn's Ball Hockey Tournament in Canada http://www.phacesfoundation.com/events/ during the weekend of the 29th and 30th.

 

ANYTHING that you can do to educate just ONE more person is what would be perfect!

 

Please feel free to share your ideas in the coming weeks so we can help each other find a way to celebrate and educate!

 

You may ask....why are we doing this is the month of March? 2 reasons - 1) To help support Vascular Anomalies Awareness Month and 2) in March of 1996 one of the very first papers recognizing PHACE as a diagnosis was published in JAMA.Thanks so much for sharing any thoughts or ideas about PHACE awareness you may have. By reaching out and sharing information, we can help so many families get the proper diagnosis quicker which hopefully will lead to a more thorough care plan for all individuals living with PHACE.

 

Happy celebrating and warm regards!

 

PHACE Syndrome Community and PHACES Foundation of Canada

 

 

PHACE Syndrome Family Conference

October 23, 2013

 

Please save the date for the next PHACE Syndrome Family Conference - June 19-20, 2014 in Wisconsin! The conference will be held at the Country Springs Hotel, the same location as last conference.

The day following the conference (June 21st) will be a family event and we hope that all attendees will stay so we can spend time together getting to know each other better.

The PHACE Syndrome Community board is excited to be putting on the conference this year and we need your help to spread the word! We have been very fortunate that past PHACE family conferences have been sponsored by the medical institutions that hosted the event. Part of the mission of the new PHACE Syndrome Community is to be organizing these conferences with support from the doctors and institutions that are part of the PHACE family.

What does this mean? It means that we need to raise the funds to put on the conference so several of our PHACE families are conducting fundraisers in the coming months so we can put on the conference. The t-shirts we are selling are part of our fundraising efforts but we need help from our community to raise funds so we can give you a top notch conference. If you are interested in helping fund raise (any amount is appreciate - big or small!), please let us know and we will work with you to help you!

 

Click here for more information.

 

PHACE Syndrome Community, Inc. - officially a non-profit!!!

September 12, 2013

 

It's official - we're official! That's right, our group of all-volunteers has found one another, joined forces and made our way through the Internal Revenue Services (IRS) process. As of August 26, 2013, PHACE Syndrome Community, Inc. is officially recognized as a 501 c3 organization. This means we are a charitable, tax-exempt organization.