Announcements
NOVA Message Forum is now active: please start sharing your vascular anomalies stories on the forum.
Forum:http://www.novanews.org/forum/
Visit the NOVA Blog for the latest information and links. NOVA is on Facebook too. Correspond with other NOVA families at our Fan or Group pages.
Group: http://www.facebook.com/group.php?gid=306674032112&ref=mf
- Conference/Meetings:
* Greensboro NC Vascular Anomalies Meeting: September 8th 2010- This Meeting is on hold as of July 10, 2010, we are still trying to work out the details. Please watch for updates.
This one day meeting will provide information and support to individuals on the diagnosis and treatment of vascular anomalies. Topics to include, treatment modalities, rare and not so rare syndromes, insurance, resources and a question and answer period. This one day meeting will be held in Greensboro, NC- we are negotiating a location at this time. For more information email us khall@mail.novanews.org.
* PHACE Family Conference: Save the Dates September 16-17 Wisconsin.
PHACE Syndrome: the Families, the Physicians, and the Facts
September 16th & 17th, 2010
Milwaukee, WI
* NOVA Family Conference: we are in the very early stages of planning a Vascular Anomalies Meeting. As previously reported donations have been very low in 2009 and 1Q 2010. With the concerns for the economy many of our regular sponsors have held off donations. We are asking NOVA Families to help. We need your support more then ever! We must raise $15 in order to host a family conference. 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. All donations are tax deductible.
Donations can be sent to NOVA PO Box 38216 Greensboro NC 27438-8216.
* Know NOVA - 30 Days of Vascular Anomalies Awareness: September 1, 2010 marks the beginning of 30 Days of Vascular Anomalies Awareness. We are asking families to help NOVA by hosting one event in your local community. This is two-fold. First it will raise awareness for hemangioma, vascular malformation and the related syndromes associated with vascular anomalies on a local level. Second it is an opportunity for you to be a part of our fundraising for 2010. If representatives from every state raised$1000 we would have $50 by the end of the month. Here are some suggestions:
Host a Raffle. Last year a Friend of NOVA family hosted a raffle in their community raising over $5000.
Host a Dinner: Friends of NOVA Families have hosted dinners at local restaurants or have gotten restaurants to sponsor NOVA donating a % of sales on a given evening to NOVA.
Golf Outings: Hosting a golf outing is a great way to raise money for charity.
5K Races: Summer is here and everyone loves to be outside in nice weather. Host a 5K in your local park.
E-bay Auctions: This has also proven to be a very successful fundraiser.
Use the New Media to raise awareness for NOVA and link to the NOVA paypal account. Use your friends and families on facebook to bring awarness of vascular anomalies, insert Youtube video of your personal journey…. provide donation links back to NOVA’s payapl
Do not forget the Old Media. There is no better way of letting people know locally of your events through the local newspaper and tv news. Write your human interest editor or local news reporter and share your journey with vascular anomalies. Tell them how NOVA helped you and provide information on how to reach us.
For more information on joining NOVA in September contact us a khall@mail.novanews.org
- Family News and Updates
* NOVA helps Romanian Child recieve help in USA: Visit www.andreainboston.com for 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 Update: NO one fully understands all the implications of this health care reform. We can be sure that changes in the way we relate to our physicians, our access to our specialists and state-state travel for medical care is at risk. Do not give up- contact your elected physicians and demand they protect your rights to access physicians that treat vascular anomalies out of state without government restriction.
* California Postpartum Support: Cathy Dore’ hosts postpartum support at the Postpartum Health Center of Tarzana Ca. Call 818-887-1312 for information.
- Recent Publications
*100 Questions and Answers about Vascular Anomalies: by Dr. Francine Blei and Carlita Anglin. If you have ever had a loved one diagnosed with a vascular anomaly you know the frustation of not being able to have your questions answered. Dr. Blei and Ms. Anglin have taken the 100 most often questions and concerns expressed by parents and patients and turned it into a remarkable book. It is all the gudiance and advice you you need! Books are availabe from the publisher for $19.95 plus shipping. ISBN 9780763766597 1-800-832-0034
* 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. http://www.ncbi.nlm.nih.gov/pubmed/19858157?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1
* A complete listing of recent publications can be found : http://www.novanews.org/category/information-from-nova
- Clinic & Research Information: There are several vascular anomaly related studies that you may be interested in enrolling in:
* 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:
6/2010
NOVA wants to welcome the new families to our organization. If you need assistance please contact our office at admin@mail.novanews.org
Dr. Greg Levitin opens the Vascular Birthmark Center of Greensboro: The Vascular Birthmark Center of North Carolina is led by Dr. Gregory Levitin, an internationally recognized expert in the diagnosis and treatment of all types of vascular birthmarks and malformations, including hemangiomas, port-wine stains, venous and lymphatic malformations, and arteriovenous malformations. Dr. Levitin accepts most major insurances and is accepting appointments for new and returning patients for consultation beginning July 19th. You can schedule an appointment either by emailing Dr. Levitin at drlevitin@gmail.com or visiting www.carolinabirthmark.com.
3/2010: Dr. Drew Schnitt: has moved his primary office. 1150 N 35th Ave. Suite 490 Hollywood, FL 33021 888-Fla-Docs (352)3627) www.drewschnitt.com
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 is seeing and treatting patietns inBeverly 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. 6/7/2010
This conference is sponsored by: Children’s Hospital of Wisconsin, Medical College of Wisconsin, the National Organization of Vascular Anomalies, and HIG (Hemangioma Investigator Group)
Schedule for the Family Conference
- Thursday, September 16, 2010
- 12:30 Registration/Event Check-In
- 1:00-5:00 Family Conference
- Following the conference: Family dinner and social event
- Friday, September 17, 2010
- 8:30 Continental breakfast
- 9:30-3:30 Family Conference (includes luncheon)
For more information go to our Blog!
