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Fall 2019 Edition
OUR NEXT CONFERENCE
 
The PSC is extremely excited to announce that San Francisco is the location for our 2020 PHACE Family Conference! 

Conference dates are June 19-20, 2020. More information will be available over the coming weeks on our Facebook pages and website www.phacesyndromecommunity.org

 
RACE FOR PHACE REPORT

The 6th Annual Race for PHACE again proved to be an amazing day for the Lauffer, Zimbicki, Davis, and Kotyk families.  We were so lucky to once again have Jill Salas and Guinnie make the journey for their 6th race.  And this year, the Butera family joined us for their first visit to Pittsburgh!!  The morning started with pre-race coffee and snacks while the kids enjoyed face painting, balloon twisting, tie dying PHACE t-shirts, and running around the North Park Boathouse while racers geared up for the 5K race!!  Runners took off shortly after 9:00 am, with our winners crossing the finish line approximately 20 minutes later.  

After the awards ceremony, the celebration continued on the patio of OTB Bicycle Café as over 20 lucky winners were called to collect their fun raffle basket winnings that were donated for race day.  Our 50/50 raffle collected over $500 and the winner (Georgia Zimbicki’s Aunt Linda Schell) graciously donated her winnings to the PSC!  Once again, the Race for PHACE raised over $15,000 - which deserves 15 exclamation points (so here goes:)!!!!!!!!!!!!!!


Our 7th Annual Race for PHACE is already scheduled for Saturday, September 19, 2020, and we encourage anyone to join us for this special day!! Or better yet, let US visit YOU in your hometown for your first Race for PHACE!  Each year, it is a time to celebrate how fortunate our kids are to have such a strong community of family and friends who support them and the PHACE Syndrome Community!

ASK THE EXPERT

When is Repeat Neuroimaging Necessary in Children with PHACE Syndrome?
Christopher P. Hess, MD, PhD, Professor, University of California, San Francisco

Most parents understand why CT or MRI was essential in the initial evaluation of their child with segmental hemangiomas. The very diagnosis of PHACE relies upon the discovery of certain characteristic brain or vessel anomalies that are not externally visible to even the most knowledgeable doctors. Depending on the extent and severity of any underlying anatomic abnormalities, the first imaging evaluation also defines the best short-term treatment planning for their child, whether it is a conservative “watch-and-wait” approach, the prescription of a medical treatment like propranolol or, in some cases, surgical correction of life-threatening disease.
 
Why and when neuroimaging becomes necessary again at a later point in time is more poorly understood and controversial. After many years of using imaging to study children with PHACE, we now know that brain structural differences are fixed and do not change significantly over time. On the other hand, some types of arterial abnormalities that are discovered in the large arteries inside of the head, neck and/or chest do change over time. Minor fluctuations in the caliber and blood flow through arteries typically mean very little. But major narrowing of arteries that significantly impede the flow of blood from the heart to the brain or other parts of the body carries an increased risk of serious outcomes, including stroke.
 
More work is necessary to define which arteries are most likely to change in caliber over time in a child diagnosed with PHACE. It is accepted now that arteries that are normal on initial imaging, including normal anatomic arterial variants which occur with higher frequency in children with PHACE, do not change over time. In contrast, arteries found to be severely narrowed on initial imaging studies appear to be at the highest risk of growing even more narrowed over time. It is thus recommended that children who have severe narrowing of the carotid or the intracranial arteries undergo repeat imaging at 6-12 months after the initial imaging exam, even if it requires general anesthesia. For children diagnosed with dysplastic or tortuous arteries without narrowing, or minor narrowing unlikely to impede blood flow, imaging can be deferred to a later point in time (ideally into early adolescence, when MRI can be done without anesthesia).
 
In order to avoid unnecessary exposure to radiation, MRI of the brain, along with MR angiography of the brain and neck, is recommended instead of CT for imaging in children. It is important to emphasize that in all children diagnosed with PHACE, repeat imaging may also be indicated if your child ever develops any new worrisome clinical symptoms (such as seizures or weakness).


Christopher P. Hess, MD, Ph.D. is Professor and Chairman of the Department of Radiology and Biomedical Imaging at the University of California, San Francisco. As a clinical neuroradiologist, he has studied images from around the world in children with PHACE to understand the origins of arterial disease and define their implications for treatment and for childhood development. A fellow of the American Institute for Medical and Biological Engineering, he has published more than 150 papers and lectures nationally and internationally on neurovascular disease. Dr. Hess is a member of the American Society of Neuroradiology, the Radiological Society of North America, and the International Society for the Study of Vascular Anomalies. He is also a member of the PHACE Syndrome Community Medical Advisory Board.

NEW MEDICAL BOARD MEMBERS
PHACE Syndrome Community proudly welcomes two new members to its Medical Board, Dr. Christine Fox and Dr. Heather Fullerton.
 

Dr. Christine Fox is a pediatric neurologist who specializes in childhood stroke. Her research focuses on risk factors for childhood stroke and how seizures affect stroke outcomes. She also has a special interest in neurologic intensive care.

Fox received her medical degree at UCSF. Subsequently, she completed a residency in pediatrics at Children's Hospital and Research Center in Oakland, a residency in child neurology and fellowship in vascular neurology, both at UCSF. She is board certified in both vascular neurology and neurology, with added qualifications in child neurology. Fox is the recipient of numerous prestigious awards, including the NIH-NINDS Neurological Sciences Academic Development Award. She is a member of the American Academy of Neurology, Child Neurology Society and American Heart Association.


After graduating summa cum laude from the University of Texas at Austin, Dr. Heather Fullerton earned a medical degree at Baylor College of Medicine. She completed a residency in pediatrics at the University of California, San Francisco, followed by a residency and fellowship in child neurology. While a child neurology fellow, she developed an interest in neurovascular diseases in children, performing studies on the epidemiology of childhood stroke.

In July 2002, Fullerton joined the child neurology staff at UCSF Benioff Children's Hospital, where she completed a vascular neurology fellowship. In 2006 she established the UCSF Pediatric Stroke and Cerebrovascular Disease Center and serves as its director. Fullerton's current projects include identifying risk factors for recurrent childhood stroke, studying blood vessel abnormalities or arteriopathies in children with stroke and determining if infection plays a role in childhood stroke.

IN SEARCH OF STORIES
We love hearing from you! If you'd like to share your child's or family's experience with PHACE Syndrome, please reach out to us.
Click here for stories other families have shared. 
ALL HELP HELPS
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 help support us:
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Please join our community by clicking here.

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CARS FOR PHACE

Hi! I’m Corinne Marlow, I’m 30, and I love cars! I grew up around go karts and 4 wheelers, anything adrenaline had my name on it! I’m a human encyclopedia of cars! Makes, models, and years is my thing! When I was around 7 or 8 I started going to car shows! I fell in love! I live for engine revs, fresh paint, and speed! Cars were adrenaline for me!

When I was 13 I suffered a concussion at school and went to get it checked out! That’s the day I found out not only did I have an internal/external Hemangioma, but I had artery abnormalities. A CT scan led to MRIs with and without contrast, and my first angiogram! They found my torturous arteries. I was banned from adrenaline that day. I still had my fun though, I just had to be a lot more cautious! 

Fast forward to age 28. I cracked my neck one day and had three artery dissections. I remember thinking, “Ugh, now I’m really banned from everything I love!” Or so I thought! It took me roughly 4 months to recover! Turns out. my arteries are very thin. It was then, after a lot of triumphs that I was diagnosed with the H-A-C-E in PHACE, at age 28! Looking back on it, that was the moment I knew I had a cause for a future car show! 

I have wanted to hold a car show since I was a little girl. It had always been a dream of mine! I made it happen! We raised roughly $900 for the PHACE Syndrome Community! I’d dreamed of that day my whole life! I had a few tears, then a meltdown as I held Cali, an adorable 6 year old, who also has PHACE, During the show, a friend with a Corvette asked her if she wanted to sit in it! She squealed! I cried from excitement...it was a surreal moment and an incredible day! The cars were so lovely, the cause was even better!  I’m so happy to have had the opportunity! Next year will be even bigger! 

CONFERENCE VOLUNTEERS NEEDED

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 San Francisco 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 info@phacesyndromecommunity.org to get involved!

SHOP + GIVE
Did you know Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to the charitable organization of your choice? Same products, same prices, same service. Support PHACE Syndrome Community by starting your shopping at smile.amazon.com today.
LEADERSHIP
PSC BOARD MEMBERS
  • Paul Butera - Secretary
  • Mary Alice Kaspar
  • Anna Kerr
  • Michael Kotyk - Vice President
  • Dom Lomardi
  • Jerri Lauffer - President
  • Jen Meints
  • Steven Russakoff
  • Jill Salas - Treasurer
  • Dawn Diegel, MD
 
MEDICAL ADVISORY BOARD
  • Beth Drolet, MD, Chairwoman
  • Denise Adams, MD
  • Christine Fox, MD
  • Illona J. Frieden, MD
  • Heather Fullerton, MD
  • Maria Garzon, MD
  • Christopher P. Hess, MD, PhD
  • Darren Orbach, MD, PhD
  • Elena Pope, MSc, FRCPC
  • Dawn Siegel, MD
PHACE Syndrome Community, Inc.
213 West Main Street #179
Rapid City, SD 57702    USA
Copyright © 2019 PHACE Syndrome Community, Inc., All rights reserved.


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