Providing Assistance in the Management of Hemangioma
& Vascular Malformation
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NOVA Announcements & Information
Latest News from NOVA: As we move into our 14 year of service NOVA wishes to extend our sincere appreciation to all the physicians and scientists around the world that have advised us in our efforts to assist individuals affected by vascular anomalies. Without your services we could not exist.
Denise Adams, MD, Sherry Bayliff, MD, Carmen Barnes, PhD, Francine Blei, MD, Lisa Buckmiller, MD, Patricia Burrows, MD, Steven Fishman, MD,
Sean Freeman, MD, Ilona Frieden, MD,John Gregory, MD Marcelo Hochman, MD, Douglas Marchuk, PhD, Denise Metry, MD, Martin, Mihm, MD,
John Mulliken, MD, Paula North, MD, PhD, John Reinisch, MD, Barry Zide, MD, DMD
View Medical and Scientific Advisors
Register for the November 2008 PHACES Conference
Registration for the planned PHACES Conference is slower then expected. In order for NOVA to fulfill our commitments to the hotel, restaurants and conference contractors we must have a minimum number of registrants by September 30. If we do not meet this number by September 30 we will be forced to make the difficult decision of canceling the meeting. NOVA is committed to serving the PHACES community and will keep you updated on this event. We are recommending at the point that hotel reservations be made but that you do not purchase non-refundable airline tickets until further notice. We regret any inconvenience this causes our families.
February 2008 Newsletter: On Januaray 14, 2008 Dr. Judah Folkman passed away suddenly at the age of 74. Dr. Folkman was the found and director of the Vascular Biology Prgram at Childrens's Hospital of Boston. He was a true visionary and scientific pioneer. When he first proposed, in the 1970s, that a cancer could be kept in check by cutting off its blood supply, he faced skepticism and even ridicule from a scientific community that simply wasn't ready for his ideas. But he persevered, even when there were setbacks, and today, more than 1,000 laboratories worldwide are engaged in the study of angiogenesis, the field he founded. Because of Dr. Folkman's vision, more than 10 new cancer drugs are currently on the market, and more than 1.2 million patients worldwide are now receiving anti-angiogenic therapy. Dr. Folkman was also a compassionate doctor, always willing to take calls from cancer patients anywhere in the world, and always passionate about trying to improve their care. A healer and teacher, he has surely lived up to the advice of his father, a rabbi, that he become "a rabbi-like doctor."
On Friday evening February 1, 2008 at shortly after 8pm Dr. George Haney was called home. With his wife and daughter by his side Dr. Haney took his last breath. Dr. Haney was a dedicated member of the Cincinnati Children's Hospital Vascular Anomalies team. He contributed his expertise to the dermatological and laser surgery medical disciplines. Dr. Haney maintained his practice in Crestview Hills, Kentucky for 25 years. He was also an adjunct professor at the University of Cincinnati. Dr. Haney was known as a compassionate and dedicated physician.
NOVA has dedicated the February 2008 edition of the Hemangioma Newsline to these wonderful physicians.
Regranex Alert: August 2008: In June the FDA issued a black box warningt for the topical gel becaplemin- Regranex. Dr. Ilonia Frieden, Dr. Antoony Mancini, Dr. Sarah Chamlin and Dr. Denise Metry; NOVA Physician Advisors have written a comment on this issue.
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News & Events |
Support NOVA |
Clinic & Research Information | |
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Coming Soon: NOVA Japan!!!! New: Information in Spanish on Hemangioma is now available on NOVA this information was provided to us by Dr. Maria Cordisco is is linked from the NOVA Argentina page- Lesiones Vasculares en la Infancia. Special Thanks to Marina for reviewing and editing the information for publication here on NOVA Link to Lesiones Vasculares en la Infancia
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NOVA Executive Director Karla Hall contacted the Children's Bridge Foundation in Canada after receiving email from many NOVA families that a young Vietnamese Child was not going to be able to be treated in Toronto. Due to the complexity of the anomaly Karla knew that there were only a few places in the world that could manage this patient. After speaking with CBF director Owlyn Walters Karla used NOVA resources to contact leading Vascular Anomaly Centers in the US. In December 2007 it was decided that Dr. John Mulliken and the Boston Children's Hospital VAC would be the best center to manage this complicated patient. NEW May 2008 update! Son headed back to Boston
*********************************** Exciting research programs at Children's Hospital of Wisconsin Hemangiomas & Low platelets and GI bleeding International Multifocal Lymphangioendotehliomatosis with Thrombocytopenia Registry
We have updated our Insurance Handbook for 2008- this document will help you get the insurance benefits for treatment of of vascular anomalies.
Patient Advocacy: Looking for support and assitance in making medical decsions then visit the diagnosisknowsis web site. There is great information on this site. |
As our outreach expands and the services we provide reach more families our financial needs increase. Please consider sending your donation to NOVA today! Mail to: NOVA PO Box 8711-104 Six Forks road PMB Raleigh, NC 27615 Attention Lillian
Donations to NOVA are just a click away with ... 
visit the charitable search engine www.goodsearch.com and enter National Organization of Vascular Anomalies as your charity. Every click earns NOVA money. Host your own fundraising event for NOVA- Contact John DuBiel at admin@novanews.org New from Goodsearch!!! Now you can do your shopping through Goodsearch and click your way to raising money for NOVA. Be Sure the National Organization of Vascular Anomalies is your Good Search charity. **************
NOVA accepts honorary and memorial donations For more information email us
Send your donation today! NOVA is now accepting donations with PayPal New Video on U-Tube for NOVA Fundraising |
August 2008: Update on Regranex ********************************* Dr. Marcelo Hochman Medical Director and Founder of The Hemangioma Treatment Foundation traveled to Manila, Phillipines May 23, 2008. The purpose of the trip was to launch a program to treat children with vascular anomalies and establish a treatment center there. The program, sponsored by Makati Medical Center, Kapuso Foundation and Rotary Club Makati West has been in preparation for over a year. Mr David Taylor, a member of Rotary Club and parent of a child with a compound hemangioma who Dr Hochman treated, has been the instrumental driving force in putting the program, known as THTF-Asia, together. Dr Hochman and Dr John Deveikis, an interventional radiologist, evaluated patients and treated a few a patients. The physicians gave lectures and set the stage for further training sessions and treatments. “THTF’s mission is to provide treatment to children with vascular anomalies who do not have access to care and to educate physicians in the management of hemangiomas and malformations. This program is a stepping stone to making access available to huge number of affected children. It has taken a tremendous amount of work on the part of many people in Manila to do this. " I am privileged to be a part of this project.” says Dr Hochman. Further information will be posted on THTF’s website, as the trip progresses.
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LA Children's Hospital Opens VAC We are pleased to announce the opening of a Vascular Anomalies Center (VAC) at Children's Hospital Los Angeles. The VAC specializes in the management of complex vascular tumors and malformations. The VAC is composed of a core multi-disciplinary team of 7 physicians and 1 nurse practitioner who collaborate in the evaluation, management, and emotional support of children with vascular lesions. Currently, there is one interdisciplinary clinic held each month. This offers the convenience of having patients seen by more than one specialist during the same visit and allows physicians to share their assessments and concerns with one another as well as with patients and family members. Contact information and physicians involved in the program are listed on the NOVA Physician page.
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NOVA Launches FACES of PHACES Campaign
May 2007- NOVA announced the Faces of PHACES campaign to benefit PHACES research, education, assistance. Events were scheduled by NOVA supporters to raise money. The First Phase of the campaign was launched in October 2007, In March 2008 NOVA reached the PHASE I Goal rasiing $15,000.00. NOVA is planning a Meeting for PHACES families scheduled for November 5-7, 2008 In June 2008 NOVA announced the second phase of the campaign which is dedicated to raise money for vascular anomalies research, eduction and patient support for PHACES.
Anyone interested in hosting a fundraising event can contact NOVA at admin@mail.novanews.org. Link to Faces of PHACES Information Donations to NOVA-Faces of PHACES are eligible for Matching Gifts. Check with your employer for your corporate Matching Gift program.
PHASE ONE Events: 10/2007 The Mighty Quinn Wristbands, Canada/International 10/28/2007 Janet & Andrew's Brunch, Atlanta, GA- 10/30/2007 Halloween Bash, Washington State 11/15/2007 Ryan's, Birthday- In Lieu of gifts 11/25/2007 Natalie & Joe's Family Reunion, Boca Raton Wyndi and Steve's Wedding Campaign 12/2007 Letter Campaign February 2, 2008 MIghty Quinn Moose Family Center Dinner& Bluegrass Band April 25, 2008 Jim & Hazel Wedding, Kent England April 2008 Mighty Quinn Event- Canada PHASE TWO-EVENTS July 22, 2008: Tutta Bella Dinne- Seattle These efforts are directed by Board of Director Roy Clemens and will be consist of several PHACES families including Kim Cody, Jennifer Duncan, Wyndi Littlefield, Jennifer Meints and Andrew & Janet Ziffer. Direct Donations may be made to NOVA- please contact us at admin@mail.novanews.org
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NOVA Receives Significant Donation from Kiwanis Club: Karl Hall accepted a unrestricted donation from the Kiwanis Club of Findlay OH. The money will be used for education and assistance.
Press Releases
June 6, 2006: NOVA Awards Grant for PHACES Research
NOVA joins Coalition of Skin Diseases June 2006 Karla Hall becomes a Member of ISSVA June 2005, Karla Hall receives NC Humanitarian Award
Michigan Family Needs Assistance!
For PHYSICIANS ONLY
A Vascular Anomalies Forum now exists for Doctors only. This is an opportunity to present cases and receive feedback from your peers. The site is operated by Dr. Orhan Konez. Dr. Konez is an Interventional Radiologist and practices in the Cleveland OH area |
1/15/2008: Dr. Dawn Siegel has modified her study, her IRB now includes blood samples from previously enrolled PHACES kids to look at high resolution chromosomes from patient and parents. Please contact her about these changes.
Dr. Hochman and the Hemangioma Treatment Foundation is notifying families in NC/SC of a program where financial assistance is being offered for surgery/treatment of vascular anomalies. If you live in NC or SC and your child needs treatment. Please contact NOVA for more information about this program.
Children's Hospital Wisconsin Launches new site including a slide presentation on Laser surgery. NOVA Scientific Advisor- Dr. Paula North and Dr. Beth Drolet are 2 members of this clinical team.
University of California San Francisco Celebrates the 15th Anniversary of the Birthmarks & Vascular Anomaly Center Dr. Ilonia Frieden, NOVA Advisor is the Coordinator of this clinic team.
10/26/2007 Dr. John Reinisch is moving his practice to Cedar Sinai Medical Center Visit our Physician Page to see his new contact information.
Boston Children's VAC web-casted the May 1, 2007 Vascular Anomalies Conference Live You can now view the web- cast on line
New Resources
Every Crooked Pot by Renee Rosen- a must read!!!!! By Elton Rokuse Beauty in Balance: A Common Sense Approach to Plastic Surgery & Treatment By Allen Rosen & Valerie Ablaza |
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The 5th NOVA Family Conference was held in Cincinnati at the Cincinnati Children's Hospital April 13-15, 2007. Over 220 people were in attendance. Thank you to everyone that volunteered, the nurses, physicians, scientists and parent volunteers. Without all of your support NOVA would not be able to assist the hundreds of families we reach each year. Message from our President: John DuBiel
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Denise Adams, Carmen Barnes, Sherry bayliff, Francine Blei, Lisa Buckmiller, Patricia Burrows, Steven Fishman, M. Sean Freeman, Iloina Frieden, John Gregory, George haney, Marcelo Hochman, Doug Marchuk, Denise Metry, Martin Mihm, John Mulliken, Paula North, John Reinisch, Mildon Waner & Barry Zide |
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Donate to NOVA now and help us expand our patient advocacy and support services.
Copyright© 2008 www.novanews.org
last updated August 18, 2008
NOVA is a 501c3a organization all donations are tax deductible. NOVA was originally founded as Hemangioma Newsline
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