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October 5-7, 2012 Cincinnati Children’s Hospital, Cincinnati, OH & Kingsgate Marriott Hotel, Cincinnati, OH

The National Organization of Vascular Anomalies offers a unique medical conference for individuals affected by hemangioma, vascular malformation and related syndromes. We bring together nationally renowned physicians to present a medical seminar on the current approaches in the care and management of vascular anomalies. NOVA Family Conferences are free to families affected by Vascular Anomalies.

Presentations on the diagnosis and treatment of vascular anomalies, the latest scientific information and details on the spectrum of disorders will be featured at the 2012 Conference. Research, Registry and Clinical Trial information will be presented.

The 2012 NOVA Family Conference also offers families an opportunity to meet other families, share their concerns, hopes and prayers.

Registration Information:

Registration can be completed on line at

http://www.surveymonkey.com/s/6JT7G9Y

Updates will be posted on facebook.

Please Return Registration to:

NOVA

PO Box 38216

Greensboro, NC 27438-8216

Email:khall@novanews.org

Conference Update: Hotel Reservations for the NOVA Family Conference may be made by going to www.kingsgatemarriott.com and entering the Group Code NFCNFA. You can also call 1-888-720-1299 and ask for the NOVA Family Conference room block NFC. Standard room rates are $102/night. The block begins on 10/4/2012 and runs through 10/6/2012. NOVA will not be making reservations for guests. We will have general conference registration information available soon.

First lets go over some basic terminology:

Congenital- simply means you were born with it.  This does not necessarily mean that it is inherited for that it was passed down from your parents.

Genetic:- when this term is used it may mean that there is an inheritance pattern but it may also simply mean that a mutation or change in the gene occurred randomly.

Inherited- this is the term that when used is meant that there is a known inherited link in a family.  There are many diseases that run in families, that there is a genetic cause that is passed down.

This is an over simplification of things but it will help you keep things straight.

In vascular anomalies we have two main groups.  Tumors and Malformations. 

The most common benign vascular tumor is the Infantile Hemangioma.  It is this lesion that primarily occurs randomly.  There is also the Congenital Hemangioma either the RICH or NICH forms.  These are less common and while the child is born with a fully formed hemangioma it is not known to be inherited. 

There are many types of vascular malformations.  Malformations may occur in the veins, arteries, smaller vessels and even the lymphatic vessels. 

Scientists have identified Genes and markers associated with malformations and hemangiomas.  They have been able to test for the presence of the genes and markers to help distinguish between the types of anomalies. 

MOST vascular anomalies are considered non-hereditary.  Through the detailed analysis they have discovered inheritance forms of some vascular anomalies.  They have identified mutations in genes that have cause familial malformations in RARE cases.

*Tie-2 gene (angiopoietin receptor): in mucocutaneous venous malformations (VMCM0

*Glomulin: in glomuvenous malformations (GVM)

*RASA1: in campllary malformations-arteriovenous malformations (CM-AVM)

The identification of these genes has allowed for more accurate and precise diagnosis, differential diagnosis, evaluation of variability in patients with known mutations and the study of treatments in identified patients.  Identification of these genes will allow the clinician to determine the type of vascular anomaly and differentiate between malformation and tumor.

In infantile hemangioma there was an identified gene in one family that appeared in the  published work of Doug Marchuk at Duke University.  There have also been identified biomarks that have helped researchers understand the pathogenesis of hemangioma and to distinguish between infantile hemangioma/congenital hemangioma and malformations.  At this time hemangioma is still primarily considered to be occurring sporadically.

References:

Vikkula, M;  Pathogenesis and Genetics of Vascular Anomalies, Ann Chir Plast Esthet, 2006 Aug-oct 51(4-5) .

Nauyen, VA; Kutzner, H; Furhapter, C; tzankov, A; Sepp, N, Infantile hemangioma is porliferation of LYVE-1-Negative blood endothelial cells without lymphatic competence, Modern Pathology, 2006 Feb:192(2):291-8

Mulliken, John, Enjolras, Odile, Congenital Hemangioma and Infantile Hemangioma: missing links.  Journal of American Academy of Dermatology, July 2004; (875-881)

Karla

Thank you to Paul and Shannon for the Brooklyn’s Best Golf

Outing that supported NOVA. The money is being used for the

2012 NOVA Family Conference.

http://wn.com/Hemangiomas

I hope this note finds everyone well! I am writing on behalf of the PHACE Registry with hope that you might consider enrolling your child. Registry data is proving to be an invaluable tool for PHACE research….we are about to begin a parent-inspired study to look at the migraine-like headaches known to occur in PHACE. We would love to include your child’s information in this and other studies!

We do our absolute best to ensure that your child’s identity is kept strictly confidential.

Enrollment in the Registry is straightforward and involves signing the consent form, completing a questionnaire and submitting a photograph of your child’s hemangioma. We can send you the information over email or by mail with an enclosed paid return envelope, whichever is most convenient for you.

Thank you so much for considering. If you can please respond with your preferred email or mailing address, or let me know if you would prefer not to enroll your child at this time, I would be most appreciative. If you have any questions whatsoever about the registry, please don’t hesitate to ask.

Warmest regards,

Denise Metry, MD
Associate Professor of Dermatology and Pediatrics
Baylor College of Medicine
Chief, Dermatology Service
Texas Children’s Hospital
Office: 832-822-3718

http://www.texaschildrens.org/carecenters/Dermatology/Phace.aspx

The NOVA Message Blog and NOVA Message Forums are administered by the NOVA Board of Directors and are moderated by Karla Hall, Executive Director of NOVA. There are no conflicts of interest to report for our moderator.

All users must register with a valid user name and email address. User Names do not have to be real names. Users may elect to keep email and identity private from other users. Users may delete or modify their own postings/comments at any time. In accordance with the NOVA confidentiality policy (http://www.novanews.org/about-nova ), NOVA Administrators, Moderators or representatives will maintain patient confidentiality of all users. We will not publish identifiable information unless written authorization is given. NOVA can not maintain confidentiality of users if users post identifiable information in their own postings. For confidential correspondence with NOVA please email us at support@mail.novanews.org.

When posting information that is not based on personal experience, please provide references/citations. (journal sources, web sites or other sources of information)

Users to the Blog and Forms must to the best of their ability post true and accurate information. We request all users to refrain from “doctor bashing” on our forms.

All postings containing links, banners, information about products and services will be reviewed by the moderator for accuracy and content. Only products or services related to health and vascular anomalies will be allowed. Any posting about a service or product must receive prior permission from the NOVA Board of Directors. Postings that did not receive prior approval will be deleted without notice.

Comments on the Blog will be approved by the moderator and then allowed to be posted. The moderator views daily. Questions posted on the blog or the forums of a medical nature will be forwarded to the NOVA Medical Director or NOVA Medical Advisors. Replies will include the name and credentials of responder. Any medical professional that is a blog or forum user must clearly identify themselves and provide credentials. All blog and forum users must behave with respect and honesty. No profanity or obscenity is allowed. Biological terminology in a medical context will not be considered profane or obscene. NO solicitation is allowed. Violators will be warned via email one time only. Further abuse will result in a banning form use. All banning will be initiated by the Moderator and approved by the NOVA Board of Directors. Blog comments of a solicitous nature will be denied permission to post.

revised 9/26/2010

PHACEing the Future

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)

  The Second PHACE family Conference was hosted in Milwaukee, Wisconsin September 17-18 and was preceded by a multi-center Research Symposium.  The conference was a great success. 

NOVA wishes to thank all the speakers and panelists for their support of the conference and for their dedication to the field.  Denise Adams, MD - University of Cincinnati College of Medicine, Cincinnati Children’s Hospital, Beth Drolet, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin, Ilona Frieden, MD - University of California, San Francisco

Maria Garzon, MD – Columbia University, Morgan Stanley Hospital, Karla Hall – Executive Director NOVA, Christopher Hess, MD, PhD – University of California, San Francisco

Jennifer Hoag, PhD - Medical College of Wisconsin, Children’s Hospital of Wisconsin, Jensen, John, MD - Medical College of Wisconsin, Children’s Hospital of Wisconsin, Craig Johnson, DO – Medical College of Wisconsin, Children’s Hospital of Wisconsin, Patricia Marik, Psy D - Medical College of Wisconsin, Children’s Hospital of Wisconsin, Denise Metry, MD - Baylor College of Medicine, Texas Children’s Hospital, Orbach, Darren, MD, PhD – Harvard Medical School, Children’s Hospital Boston, Dawn Siegel, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin

Special Thanks to: Peggy Troy, RN, MSN, President and CEO Children’s Hospital and Health System, Millwaukee Wisconsin. Adrian Baylis, PhD, CCC/SLP, Marcia Seefeldt, Children’s Hospital of Wisconsin, Jennefer Lehman, Children’s Hospital of Wisconsin and all the Volunteers that made this weekend a wonderful experience.

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PHACEing the Future: these children make the future bright!