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PHACE Syndrome Community  
March 2019 News
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What is PHACE?

We often get asked "what is PHACE and what does it stand for?" 

I bet you've been asked this and it can be difficult to explain. Please feel free to share this newsletter so people around you, family, friends, and even physicians, have a better idea of what PHACE Syndrome encompasses.

PHACE Syndrome is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries.

Our logo was specifically designed so that each of the letters, PHACE, reflects the associated birth defect:

P
Posterior fossa abnormalities and other structural brain abnormalities.

H
Hemangioma(s) that are typically large and located on the skin of the head and neck area.

A
Arterial anomalies of the head (brain) and neck. These can be arteries that are too narrow (stenotic) or dilated (aneurysmal) or the lack of normal blood vessels in the head and neck.

C
Cardiac defects, with the most common being coarctation (narrowing) or the aorta or other aortic abnormities.

E
Eye anomalies not caused by the growth of the hemangioma such as problems with the optic nerve.

 

Would you help us raise awareness about PHACE Syndrome? 

DONATE TODAY!
Thank You to our Facebook Friends
  
We can't believe how generous our Facebook friends were last year. 
We want to say a special THANK YOU to our friends who celebrated their birthdays in honor of the PHACE Syndrome Community in 2018.
Thank you Alexander, Jeannie, Jessica, Kelly, Michael, 
and Yvonne! You raised over $1000 for us!!
If you're interested in hosting a PSC Fundraiser for your birthday, check out our facebook fundraisers here 


For our friends who aren't on Facebook and still want a way to donate, check out our Birthday Donation page on our website.

If you have any questions or need help setting up a birthday fundraiser, please email Jessica at jolson@phacesydromecommunity.org.

 

Ask the Expert

Multidisciplinary centers are common in medical institutions that care for patients with complex medical conditions.  These patients require the care of multiple medical specialists. The aim of these centers is to provide the patient and their family with the best coordinated care possible.  This care is provided as a continuum from the intake process, initial visit and follow up evaluations.  These centers become the medical home for many patients.  PHACE syndrome is a complex medical condition in which the expertise of multiple specialists is needed.   An infant who is initially diagnosed with possible PHACE syndrome will need to be evaluated by a vascular anomalies specialist such as a dermatologist or hematologist/oncologist, a cardiologist, and an ophthalmologist.  Other specialists that may also be involved include radiologists, interventional radiologists, neurologists, gastroenterologists and endocrinologists.  

Multidisciplinary clinics ensure that your child is being evaluated by experts that have an interest and knowledge in your child’s condition. These specialists are familiar with your child’s diagnosis, have undergone educational training related to the diagnosis, educate others about the diagnosis and usually lecture or participate in research studies related to the diagnosis.   Some centers have a Core Team that may include a medical, surgical and/or radiology specialist that a patient and family meet in one location.  These providers are responsible for the initial evaluation of the patient.    This team then determines if other specialists are needed.  If other specialists are needed, the patient may see these specialists at the same location or at a different location.   Other centers will evaluate your child’s medical information in a multidisciplinary conference (a conference that includes all of the specialists) before the visit and a decision is made at that conference what specialist the patient will see.  Most centers also have nurse practitioners that help with the examination of patients, and/or nurse coordinators or care navigators that plan a patient’s visit, “shepherd” the patient and family through the visit, and provide teaching and follow up information for the patient and family.  Many centers also have support staff such as social workers, psychologists, OT, PT, genetic counselors, child life specialists and others to help with the visit as needed.

It is important to ask the intake team at the multidisciplinary center what your visit will be like. Who will your child be seeing?  How long will the visit take?  Will there be any other testing like blood work or radiology testing during your child’s visit? If the center is out of state ask if you can talk with a social worker or nurse about lodging, transportation and get a general sense of the area in which you will be travelling. Multidisciplinary centers offer wonderful care teams but sometimes the information received is overwhelming.   It is helpful to take a moment prior to leaving to note any additional questions you may have or to ask specifically who you can call or communicate with to ask additional questions.   Parents and caregivers are always the best advocates for their children.
Dr. Adams is Co-Director of the Vascular Anomalies Center (VAC) at Boston Children’s Hospital and Associate Professor at Harvard Medical School in Boston, MA.  One of her main priorities has been establishing standards of care for patients with vascular anomalies and the assessment of short and long term outcomes for these patients. Her long term goal is to establish an interdisciplinary vascular anomaly consortium to investigate vascular anomalies and improve the outcomes of patients with these disorders. Dr. Adams also currently serves as a member of the PHACE Syndrome Community Medical Advisory Board. 

PHACE Awareness Week


March 17 - 24
 
To get an awareness poster for you or your PHACE child, email two photos to:
phacesyndromecommunity@gmail.com
The customized image will be returned to you via email once it's ready and will also be featured in a gallery on our website 
In This Issue
Connect
Are you a PHACE family? 
Please join our community by clicking here

Links to our Facebook Groups
  Private Families page
  Family Friends and Supporters
Registry Update
Welcome to all of the new families who have joined our online Facebook community in the past few months! We are excited you have found us and would love to share a bit of information with you.
If you are interested in helping to advance knowledge of PHACE Syndrome as well as support research, please consider joining our Registry. The PHACE Syndrome Registry is housed at the 
Children’s Hospital of Wisconsin and is lead by Dr. Dawn Siegel. Participating in the Registry is super easy! Feel free to either send an email to Olivia at odavies@mcw.edu or visit the 
Registry website at https://www.chw.org/…/phace-syndrome/phace-syndrome-registry  it only takes a minute to get signed up at the very basic level and you can choose to share more information 
and participate at any level you are comfortable with. Joining the Registry is one of the best ways to receive current updates on PHACE syndrome research. Although
the Registry is based in the US, international families can join at varying levels depending on your hospital’s involvement in and collaboration with the Registry. Please contact 
Olivia for the most up to date information on international participation. We hope you will join and help us learn more about PHACE syndrome!

Jill R. Salas
Co-founder and Past President, PHACE Syndrome Community


www.phacesyndromecommunity.org
Do You Have a Story?

We love hearing from you! If you'd like to share your child's or family's experience with PHACE Syndrome please don't hesitate to reach out to us. Here's a link to stories other families have shared. 

 

Calling all Volunteers!


If you've had the opportunity to attend a PHACE Syndrome Community Conference, you know how meaningful it is to meet other families supporting loved ones with PHACE. We also hear from amazing experts in the PHACE field of study so the conference is an event not to be missed.

Check out our 2018 Conference Presentations here to get an idea of how informational and meaningful this event can be!

We are planning our 2020 Conference and would love your help. Our community is strong and we have a lot of fun together because of awesome volunteers like you!

Email or call us to get involved!

email: info@phacesyndromecommunity.org

phone: 1 (678) 744-3971

On February 28th, the National Organization for Rare Diseases (NORD) celebrated Rare Disease Day. 
According to the NORD website, every year, individuals around the globe come together on the last day of February to recognize and raise awareness for rare diseases. The theme for this year's awareness campaign was  'Bridging health and social care' and Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

The slogan for this year is 'Show Your Rare, Show You Care.' You can still get involved in the #ShowYourRare campaign by sharing your face-paint selfie or group photo on social media using the hashtags #RareDiseaseDay and #ShowYourRare.

PhaceSyndromeCommunity is a member of this worldwide organization

YOUR SUPPORT MAKES THE DIFFERENCE!

Through your generous donations, we are able to connect with new PHACE families, plan an amazing conference, raise awareness about PHACE, and support research to someday find the cause!

Please consider donating today!
Donate Today!
Our Leadership
Board of Directors

Jerri Lauffer - President

Michael Kotyk - Vice President

Lawrence Baylis - Treasurer

Paul Butera - Secretary

Jill Salas - Past President

Mary Alice Kaspar

Jen Meints

Steven Russakoff

Dr. Dawn Siegel

Executive Director
Jessica M. Olson, MHA, FACHE

Medical Advisory Board

Beth Drolet, MD

Darren Orbach, MD, PhD

Geoffrey Heyer, MD

Maria Garzon, MD

Dawn Siegel, MD

Christopher P. Hess, MD, PhD

Ilona J. Frieden, MD

Elena Pope, MSc, FRCPC

Denise Adams, MD

PHACE Syndrome Community, Inc.
3213 West Main #179
Rapid City, SD 57702
info@phacesyndromecommunity.org
(678) 744-3971
Copyright © 2019 PHACE Syndrome Community, Inc., All rights reserved.


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