Announcements
- A Message from our Executive Director: Karla Hall
In 1994 when my child was diagnosed with a hemangioma, forming a support network with other families was a means of getting through a difficult time. Lillian DuBiel and I survived our daughters’ experiences with daily medical procedures, pain, and surgery by talking each other through the ups and downs. When we realized we could help other families through a support network we could have never imagined how a 2 page newsletter would turn into a multi-national nonprofit organization.
Our daughters have grown and so has our support network. NOVA’s growth has required us to rethink and change the way we reach families. Seventeen years ago the Internet was barely off the launch pad, a quarterly newsletter via snail mail was how we got our message out. Today daily updates via the social networking media, twitters, face-book, text messaging allows us to reach many more families in a more efficient and timely manner. As scientific information is published in the medical journals NOVA can inform our families across the globe. The advances in technology have enhanced the way NOVA works to educate those affected by vascular anomalies.
In addition to the changes in technology our organization has gone from a local support network for hemangioma to a network that provides information and support for ALL vascular anomalies related diagnosis. In 2005 we realized that as the diagnosis of PHACE was becoming better defined we would need to expand our services to directly assist those families. In 2007 we held a special session of the NOVA Family Conference for PHACE and in 2008 Co-hosted the first Family Conference for PHACE. Since then NOVA has sponsored and participated in 2 medical/scientific meetings for PHACE and has been a part of the consensus statement on the diagnosis criteria for PHACE. There is a support community for PHACE on the Internet and face-book which NOVA contributes.
In 2010 the diagnosis of CLOVES Syndrome was reported in the literature and under the guidance of our physician advisors we added to our web site an informational page on CLOVES. There is now an independent group on face-book for CLOVES that is growing.
For many years NOVA has worked with families affected by medical complications of coagulopathy. At first this was known as Kasa-Bach Merritt Syndrome, thrombocytopenia and now is seen to be associated with Kaposi-form Hemangioendothlioma a rare benign tumor. NOVA is encouraging all families with coagulopathy issues and vascular anomalies to enroll in the National Registries for Rare Benign Tumors and Coagulopathy coordinated by Cincinnati Children’s Hospital.
In October 2011 we co-sponsored the Interdisciplinary Workshop on Vascular Anomalies Associated with Coagulopathies held in Milwaukee, Wisconsin. The goal of this workshop was to provide an open forum for interdisciplinary clinicians and investigators to accelerate the development of guidelines of care in this field. Additionally we participated in a a cooperative group of Vascular Anomaly advocacy/education groups collaborating on ideas for supporting our patients and their families. This meeting held in early Fall 2011 was hosted in Cincinnati.
We are excited to announce that in 2012 once again NOVA will be hosting a Family Conference. The conference will be held on October 5-7 at Cincinnati Children’s Hospital. (Details to follow)
Change and Growth is essential for small non-profits to remain relevant. NOVA is dedicated to maintaining our mission to assist individuals affected by vascular anomalies while employing the new technology and adjusting our focus to do so.
Facebook has become the quickest way to communicate with our families. Our facebook page is: https://www.facebook.com/AZRareDisease#!/groups/306674032112/ please join us on facebook.
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IMPORTANT ANNOUNCEMENT FOR PHACE FAMILIES: several centers have noted patients with PHACE as having decreased enamel, increased dental cavities and other dental problems. NOVA has been asked to communicate with our PHACE families and help collect preliminary data for the registry. This information will be used for directing new research, understanding genetic correlations for PHACE and Dental Hypoplasia and other dental concerns. Please send us an email noting the patent’s name and specific dental concerns - we will then contact you with more information about this information. Email us a Khall@mail.novanews.org
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Literature Update
*We have done an extensive review of literature on the use of Propranolol in the treatment of hemangioma. A summary of this review can be found only here on the NOVA site: http://www.novanews.org/information/hemangioma/hemangioma-treatment/propranolol.
*****NEW*****
* More on Propranolol: Use of Propranolol for the treatment of hemangioma in PHACE Syndrome, (Frade F, Kadiub N, Soupre V, Cassier S, Vazquez MP, Picard A.) Arch Pediatr/ 2012 Jan 19(1) 55-8
* PHACE Syndrome with Growth Hormone Deficiency and Absence of Bilateral Internal Carotid Arteries: A Case Report, (Altin H, Alp H, Sap F, Karatas Z, Baysal T, Karaasian S.) Pediatric Dermatol 2011 Oct 20. doi:10-1111
* Clinical spectrum and Risk of PHACE Syndrome in cutaneous and airway hemangioma: (Haggstrom, Skillman, Garzon, Drolet, Holland, Matt, McCuaig, Metry, Morel, Powell, Frieden), Ach Otolaryngol Head and Nec Surg 2011 Jul: 137(7):680-7.
*Current Knowlege and managment of vascular anomalies, II malformations:(Hochman M, Adam DM, Reeves TD.) Arch Facial Plast Surg 2011 Nov-Dec; 12(6):425-33.
*Newly noted correlation of AVM in PHACE Syndrome. (Brandon K, Burrow P, Hess C, Metry D. AVM: A Rare Manifestation of PHACE Syndrome. Pedia Dermatol, 2011 Mar 28 (2);180-184.)
********* Earlier Studies********
*Cloves syndromeis a complex disorder of congenital lipmatous overgrowth, vascular malformations, epidermal nevi and skeletal spinal anomalies. This study reports the occurrence of spinal and paraspinal fast flow lesion in 6 patients. (AJNR Am J Neuroradiol 2011 Feb, Complex Spinal Paraspinal Fast Flow Lesion in Cloves Syndrome, Alomari, Chaudry, Rodesch, Burrows, Mulliken, Smith, Fishman, Orbach)
** Klippel Trenaunay Syndrome- 2 case studies outlined in relationship to pregnancy. (Obstet Gynecol Int 2010;2010:706850, Klippel Treuenaunay Syndrome and Pregnancy Gundogan, Jacquemyn)
*A step by step method delineates the thinking method that may be used when presented with a complicated / difficult hemangioma. This algorithmic method takes into account the multifactoral approach to management and includes location, growth, treatment responce, expected outcome and psychosocial concerns. (J Craniofac Surgery, 2011 March 9, Algorithmic Approach to the Management of Hemangioma., Soltani AM, Reinish JF)
*Sirolimus for the treatment of complicated vascular anomalies in children. Sirolimus appreas to be a safe and effective in the treatment of children with life threatening vascular anomalies and represents an important tool in treating these diseases. (KHE and other complicated vascular anomalies) (Pediatric Blood Cancer, 2011 March doi:10.1002/pbc23124, Hammill AM, Wentzel M, Gupta A, Nelson S, Lucky A, Elluru R, Dasqupta R, Azzizkhan RG, Adams DM.)
*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 frustration 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 guidance and advice you you need! Books are available 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
* 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.
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. July 2011
