Announcements
- Media Attention and NOVA: Share your vascular anomaly story with your local media and spread the word about NOVA & the importance of accurate diagnosis and treatment. We are putting together a media brief on how you can get the attention of the local media. Use photos, video etc… we need to get their attention once again!
- Conference/Meetings:
We are in the very early stages of planning a Vascular Anomalies Meeting. The meeting will feature speakers on a variety of topics as well as opportunity to ask questions from a panel of physicians and scientists on the diagnosis and treatment of vascular anomalies: hemangioma, malformations, rare benign tumors and syndromes. Keep watch on this site and facebook for dates and speakers.
- Human Race update 2/2010
Do to a lack of interest in the 2010 Human Race by NOVA families we have decided to not actively participate in the Human Race. We are asking families to instead send their donations to NOVA directly. If you have alaready donated on line do not worry we will still get the donation as agreed with the Volunteer Center of Greensboro.
- Donate to NOVA: Despite a good 4Q 2009, donations to NOVA were down by nearly 40% in 2009. NOVA continues to offer the same services and support to everyone affected by vascular anomalies. We need your continued financial support. NOVA exists by single donations of families we server, donations of $50, $25 even $10 goes a very long way because of the way we are organized. NOVA continues to operate as an all volunteer organization. All donations to NOVA go directly to the support services we provide to individuals affected by vascular anomalies. Last year we provided assistance to many individuals by providing emergency transportation and accommodation grants so that families could travel to medical care.
- Family News and Updates
* Son Pham: Son has returned to Viet Nam and is adjusting to being back home! See the blog for update and links to photos. http://www.novanews.org/blog
* Be sure to follow NOVA on Facebook, we are replacing our message forum with the NOVA Facebook at this time. http://www.facebook.com/pages/National-Organization-of-Vascular-Anomalies-NOVA/98394768856?v=app_2373072738#/pages/National-Organization-of-Vascular-Anomalies-NOVA/98394768856?v=wall
* NOVA has joined with 5 other organizations to issue a statement on how health care reform will likely affect families affected by vascular anomalies. To read the statement visit NOVA on Facebook
* California Postpartum Support: Cathy Dore’ hosts postpartum support at the Postpartum Health Center of Tarzana Ca. Call 818-887-1312 for information.
- Clinic & Research Information:
* Diagnosis Criteria for PHACE Consensus Statement Published: Journal Pediatrics -2009 Nov;124(5)-1447-1456 PMID:19858157 Authors: Denise Metry, Geoffrey Heyer, Christopher Hess, Maria Garzon, Anita Haggstrom, Peter Frommelt, Denise Adams, Karla Hall, Julie Powell, Dawn Siegel, Ilona Frieden, Beth Drolet.
Link:
* Safety and Efficacy Study of Sirolimus in Complicated Vascular Anomalies: This study is recruiting participants. Sponsored by Children’s Hospital medical Center of Cincinnati. CTG identifier NCT00357819. Purpose: to determine if the use of sirolimus in the treatment of children and young adults with complicated vascular anomalies will prove to be safe and provide objective response. Official Title: A Phase 2 Study - Clinical Trial Assessing Efficacy and Safety of the mTOR Inhibitor Sirolimus in the Treatment of Complicated Vascular Anomalies.
* PHACE Syndrome Outcome Study: While it is known that children with PHACE Syndrome may have abnormalities of the blood vessels in the brain and structural brain abnormalities, it is not know what the significance of these abnormalities is or how this affects children as they grow. This study will look at specific areas of development, neurologic, psychological, and cognitive and will use the data to develop clinical guidelines for the management of PHACE Syndrome. Contact Linda Gaetner CCRC, Clinical Research Coordinator II, Children’s Hospital of Wisconsin, Tel 414-456-5769
* PHACE Patient Registry: Researchers at Texas Children’s Hospital/Baylor College of Medicine, members of the Hemangioma Investigative Group have developed a patient registry, which is designed to help clinicians and basic scientists understand the cause of PHACE Syndrome. Caregivers or patients interested in enrolling in the registry should contact Dr. Denise Metry dmetry@bcm.tmc.edu or 832-822-3718.
- Welcome:
2/2010 NOVA wants to welcome the new families to our organization. If you need assistance please contact our office at admin@mail.novanews.org
1/2010 Welcome to Dr. Gregory Hale, Director Pediatric Hematology/Oncology MBT All Children’s Hospital St. Petersburg Florida.
Welcome to Dr. Phillip John, Associate Professor, University of Toronto, Interventional Radiologist, Director Vascular Anomalies Center, The Hospital of Sick Kids, Toronto Canada.
Dr. Gregory Levitin has relocated to California. His practice is located in Beverly Hills, 435 N Beford Rd #203, Email: drlevitin@gmail.com. Dr. Levitin is licensed to practice medicine in NY, NJ and CA for more information on his practice please contact NOVA
Dr. Patricia Burrows has relocated to Texas Children’s Hospital in Houston. She is the Director of Interventional Radiology.
THE NATIONAL ORGANIZATION OF VASCULAR ANOMALEIS FORMERLY HEMANGIOMA NEWSLINE PROVIDES THIS INFORMATION TO FAMILIES AS A RESOURCE. IT IS NOT INTENDED TO ENGAGE IN THE PRACTICE OF MEDICINE OR TO REPLACE THE PHYSICIAN. NOVA DOES NOT CLAIM TO HAVE MEDICAL KNOWLEDGE. NOVA DOES NOT ENDORSE ANY PARTICULAR PHYSICIAN, TREATING FACILITY OR TREATMENT PROTOCAL. IN ALL CASES NOVA AND ITS BOARD OF DIRECTORS RECOMMENDS THAT YOU SEEK THE OPINION OF A PHYSICIAN EXPERIENCED IN THE MANAGEMENT OF HEMANGIOMAS AND VASCULAR MALFORMATIONS.
Rev. 2/25/2010
