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PHACE June 2018 News
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PHACE Family Conference Summer 2018

Conference is coming this month!
 
Registration has closed for the 2018 PHACE Family Conference in Atlanta and we are pleased to see so many of our wonderful families planning to join us!
Here are a few tips to make sure you’re ready for conference weekend – June 29 through July 1!

  1. Make sure you reserve a room at the DoubleTree Hilton in downtown Atlanta.  PSC has reserved a block of rooms at a discounted rate for families to stay, making it convenient to attend all conference activities. Please click here to reserve your hotel room now. 
  2. Check out the Tentative Conference Itinerary to read through the session topics and see what our families will get to learn and ask questions on this year.
  3. Read more about our amazing conference speakers and PHACE doctors on this page.  You may see a familiar face or two!
  4. Follow our PSC Facebook Page here and the discussion in the Private Group for more details as we get closer to the conference date.

 
We can’t wait to see you in Atlanta this month! If you have any questions, please contact
Janet Ziffer at jmziffer@yahoo.com.

PHACE Syndrome Awareness Week March 18th to 25th
Thank you to all of our families who participated in this year’s PHACE
Awareness Week!

We had 127 “PHACE – A Special Case posters” made and shared on our website and social media. And we had nearly 80 other posts from people with some kind of photo to help spread awareness and promote education on PHACE Syndrome.

You tuned in for the new PHACE facts, wore red on Wednesday to work and school, watched webinars made by doctors on our Medical Advisory Board and donated to the PHACE Syndrome Community.

Our awareness efforts did not go unnoticed – we had two new families join the PHACE registry and nine people join the closed Facebook group during PHACE Awareness Week. We consider this year’s PHACE Awareness Week a success!
We appreciate your family’s participation and are so happy to have you as part of our PSC Community.

Save the Date for next year’s PHACE Awareness Week – March 17-24, 2019.
Ask The Expert
Q and A: Vaccines and PHACE Syndrome

Dr. Elena Pope, MSc, FRCPC
Professor of Paediatrics, University of Toronto
Fellowship Director and Section Head, Paediatric Dermatology,
The Hospital for Sick Children
Toronto, Canada

Can young children on Propranolol get their vaccines on time?
  • There is no need to delay or interrupt the regular vaccination schedule while children are treated with beta-blocker medications, such as propranolol.
Are there any types of treatments (e.g., steroids) which typically require certain vaccines to be delayed in children with PHACE? If vaccines are delayed, when should titers be checked or when should those vaccinations resume?
  • Patients receiving high doses of steroids (more than 2 mg/Kg/day) or other immunosuppressive drugs (example: vincristine) could receive the vaccines typically recommended for the first year of life (e.g., DTPT). It is possible that immunity titers while on steroids may be suboptimal, therefore checking the titers after steroids/other immunosuppressants are discontinued (after 1 month) and revaccinating if there is no evidence of immunity, is recommended.
  • For live attenuated vaccines (example: chickenpox vaccine, measles, mumps, rubella), the recommendation is to withhold vaccination while on treatment and to vaccinate 1-3 months after the steroids are discontinued.
  • Topical steroids and inhaled steroids should not affect the immunity after vaccination, therefore, children receiving these should follow the recommended vaccination schedule.
Are there any other vaccinations that would be beneficial to  infants/children with PHACE?
  • Influenza (flu) vaccine is recommended annually for the general population.
What are some tips for discussing vaccination concerns with your child’s pediatrician?
Infants and children should receive all scheduled vaccination as recommended by the American Academy of Pediatrics, Center for Disease Control and World Health Organization, including children with PHACE. There is a significant body of evidence demonstrating that benefits of
vaccination outweigh potential risks. We strongly encourage parents to address vaccination concerns with their child’s doctor. Potential questions a parent may consider asking:
  • What are the known risks for each vaccine?  How common are they and how serious can they be?
  • When can the vaccination schedule resume, if interrupted?
  • What are and how bad can the diseases we vaccinate against be for my child?

References:
Red Book- 13 th Edition, American Academy of Pediatrics 2015
https://www.cdc.gov/vaccines/parents/index.html
https://www.cdc.gov/vaccines/schedules/hcp/imz/child-adolescent.html
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

Please help us treat PHACE and register your affected family with the PHACE Registry at the Medical College of Wisconsin. Please contact Angela Beltrame (anbeltrame@mcw.edu) or 414-955-2847, or Katherine Mueller (kamueller@mcw.edu) or 414-955-2846 for more information on registering.

Would you like to see our past Newsletters?  Click -->here<--

Thank you to our business sponsors



The PHACE Syndrome Community, Inc. is also proud to be members of:


AND
Kilimanjaro Fundraiser

The Verska family, from Atlanta, Georgia, is launching a fundraiser to benefit the PHACE Syndrome Community surrounding the planned climb of Mt. Kilimanjaro by Steve and their 14-year-old daughter Cici.  The climb is in the last week of July, and there is a fundraising party planned in late June featuring activities like exercise challenges with high altitude simulation equipment! 

Both Kim and Steve are turning 50 this year and wanted to use the occasion to help out with the PHACE cause.  Kim Verska has served on the Board of the PHACE Syndrome Community, Inc. and acts as its legal counsel as needed.

PHACE Syndrome Community
The PHACE Syndrome Community (PSC) is in its fifth year helping PHACE families. 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.








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. 
Volunteer Spotlight - June 2018

It is not very easy to volunteer in a non-profit organization when you have a full-time job and all of the regular life commitments most of us have.  It takes a special individual to step up and give of their time and their energy.  In June of last year, Alaina Leverenz was volunteered by her mother and sister (Linzi) to help us with marketing in the organization.  She had no idea what to expect or what she would be asked to contribute.  She volunteered on our Marketing Committee, helping us with our website and newsletter as well as helping to get the word out about the 2018 PHACE conference. 

Less than one year later, she is now leading the Marketing Committee and making a significant impact to all of our PHACE families. Alaina does so with a ton of energy, a big smile on her face, and a willingness to help at any time. A big thank you, Alaina, for being generous with your time and helping so many families!

Linzi's Story

I am Linzi Leverenz, a 15-year- old girl with PHACE syndrome and an aspiring neurosurgeon. I was born with Dandy-Walker malformation and hemangiomas on the right side of my face and neck and esophagus. I was sent to Little Rock Children’s Hospital to see Dr. Milton Waner for my hemangioma that was pushing into my esophagus. I went through Vincristine chemo therapy for my hemangioma until I was almost 2. I also had multiple laser surgeries for my facial hemangioma.  

I had my VP shunt placed at 7 months old due to hydrocephalous. Everything was fine until July 15, 2015 when I got a huge headache and began vomiting. I eventually went to the ER and they discovered my shunt malfunction. I had brain surgery to fit it the next morning.   I developed left gaze palsy and was sent to the eye doctor for examination. My eye doctor didn’t find anything wrong but sent me to a neuro ophthalmologist just to be sure. That neuro ophthalmologist mentioned PHACE syndrome. He told my pediatrician to do tests for PHACE Syndrome. I then saw a geneticist and dermatologist who confirmed I have this condition. My dermatologist had done her residency at Children’s Hospital Milwaukee and she knew all about PHACE and told us about the Family Conference.

I required another shunt revision in April 2016. I had kept that shunt for almost a year when my headaches came back stronger than ever and I also had a lot of back and stomach pain. A pseudocyst was found at the end of my shunt tube. My shunt had to be externalized and it was extremely painful. I have needed 3 shunt adjustments since my most recent shunt surgery.

In June 2017, my migraines began to progress. The doctors call it hemiplegic migraine. Hemiplegic migraine is classified as a migraine that mimics a stroke. In October 2017, an MRI and MRA showed progressive narrowing in posterior cerebral artery CP(A). I had a cerebral angiogram in November to check out blood flow inside my brain as well as get clearer images of my abnormal arteries. My angiogram showed no decrease in blood flow. My headaches continued getting worse. Dr. Heyer recommended to go to a pediatric headache clinic to see if they could help me. We went to Children’s Mercy Headache clinic in Kansas City in December 2017. I met Dr. Anna and Dr. Bickle who helped me get better with natural therapies.

Things have finally settled down health wise. I am mainly focusing on homeschool. I finished my neuroscience book I got for Christmas and am now reading a book my new neurologist suggested. I already have a list of hospitals I would like to work at when I become a neurosurgeon. I already know way too much about shunts and arterial anomalies, so I may as well make a career out of it. My main goal is to be able to take care of the future generations with PHACE Syndrome. I want to be able to look at my future patient’s anxious mother and say “I have PHACE Syndrome. Your child is in the best hands possible.” I want to be just like my superhero neurosurgeon who has saved me so many times.

My neurosurgeon truly inspires me. I won the lottery when she was assigned to be my neurosurgeon. I am the luckiest of the unlucky because I have had 5 brain surgeries and 1 heart surgery, but I have a great surgeon and friends, a great family and I also have the entire PHACE community to keep me going no matter how hard it gets. One scan, one blood draw, one appointment or one symptom I have could lead to a minor or major discovery for PHACE Syndrome. With every ER trip or shunt surgery, the registry could be getting closer to the answers we all want. Somewhere in my brain holds the secrets to PHACE. Maybe my medical history helps discover it or maybe my intelligence and neurosurgical work will find it but I know it is there somewhere. I am capable of great things.

I refer to people with PHACE syndrome as rare gems because we are rare, and we are also as beautiful as gemstones, both inside and out. We all have a lot of similarities and differences. I believe rarity is beauty and beauty is rarity. I never dreamed one headache would change everything. As much as I hate being sick, I would not change it even if I could. I am the intelligent and selfless person I am today because I had brain surgery and got diagnosed with PHACE. I am a beautiful warrior princess with battle scars.

PHACE Syndrome Community
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, relatives, family friends, and prominent PHACE doctors. Please consider donating to help our cause. Your donation will help us sustain and grow our organization and the care for affected families into the future. - http://www.phacesyndromecommunity.org/donate
 
Our 2017/2018 Board

Lana Alokhina - Secretary
Adriane Baylis
Lawrence Baylis - Treasurer
Paul Butera
Cristina Camacho
Kristin Garben
Jerri Lauffer - President
Mary Alice Kaspar


 

Michael Kotyk
Jen Meints
Steven Russakoff
Jill Salas - Past President
Dr. Dawn Siegel
Nancy Stracener
Andrew Ziffer – Vice President Operations
Janet Ziffer

PHACE Syndrome Community, Inc.
4514 Chamblee Dunwoody Rd., Suite 450
Atlanta, GA 30338, USA
info@phacesyndromecommunity.org
(678) 744-3971
Copyright © 2018 PHACE Syndrome Community, Inc., All rights reserved.


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