NOVA Donations

August 26, 2020 by  
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National Organization of Vascular Anomalies: NOVA is a nonprofit organization that provides assistance to patients and families with vascular anomalies and syndromes.

In our 2019-2020 Fiscal Year there were donations to NOVA through:

Network for Good

Giving Tuesday



NOVA Provides information, assistance and support to patients and families through donations.

This year we received monthly donations from $25-$250 per month. In addition we received yearly donations in the amount of $500-$1000.

Our Donation Goal for 2020-2021 is $10,000.00

For more information to support NOVA and families with vascular anomalies and syndromes email us at

Giving Tuesday December 2020

November 19, 2019 by  
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“Giving Tuesday is about more than giving money; its about supporting the vascular anomalies community”

Communities around the world come together for a global day of giving to charitable and nonprofit organizations. As the giving season is approaching, NOVA is reflecting on our donors, volunteers and families that are in need of our support. The more that is donated to NOVA the move assistance we can help those with vascular anomalies

NOVA is a nonprofit organization that provides patient and family support, advocacy and education for children and adults.  NOVA is a 501(c)(3) organization.  All Donations are tax deductible.

NOVA is providing Patient and Family Support and Advocacy, Educational Materials and Resources, Medical Research, Insurance Assistance, Physician Networking, Charitable Grants and Medical Conferences and Webinars.

Provide NOVA Support through our Pay Pal Link:

Use our Pay Pal Account

As of today (December 12, 2020) we have donations sent to NOVA through PayPal.  We appreciate the donations that support families and patients of vascular anomalies. For more information for donations and support email NOVA at

Thank you for your support.

What You Should Know about Venous Malformations

November 16, 2019 by  
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• A venous malformation (VM) is a result from abnormally developed veins.
• A VM may appear at birth but often does not appear until later in life.
• A venous malformation is sensitive, and painful. They are often problematic for the patient.
• The appearance of a VM is often a “swelling” in appearance with a blue discoloration.
• Some VM appear on the surface of the skin, these are called superficial malformations. Other lesion may be under the surface of the skin and are called
deep malformations.
• VM often grow over time and do not regress.
• Unless there are complications the VM can be managed with compression, using a compression garment.
• If the VM is complicated with complications treatment may include sclerotherapy, laser treatment, embolization and surgical treatment.

Gabriel has had several treatments for his VM and is doing well.

A venous malformation is formed by abnormally developed venin that are often enlarged and do not work properly. A VM may occur anywhere in the body including muscles, skin, soft tissue and even internal organs. A VM can be localized or diffuse, they may occur in more than one part of the body. They may contain deep veins and superficial/small veins and may be a combination of both type of veins.

A VM may be compressed or expand, during growth, exercise, emotion, pregnancy, puberty, trauma, or surgery.

The cause of a VM is not known. The lesion is often caused in the abnormal development of veins during fetal development. In rare cases the VM has been found to have a genetic change in a TIE-2 gene. A VM is not caused by medications, or environmental factors during pregnancy.

Venous Malformation are present at birth but may not be identified until adolescence and adulthood.

Neurodevelopmental Outcomes in Children with PHACE

December 1, 2016 by  
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Pediatr Dermatol. 2016 Jul;33(4):415-23. doi: 10.1111/pde.12870. Epub 2016 Jun 13.
Neurodevelopmental Outcomes in Children with PHACE Syndrome.
Brosig CL1, Siegel DH1,2, Haggstrom AN3,4, Frieden IJ5,6, Drolet BA1,2.
Author information
Practitioners who work with children with posterior fossa, facial hemangiomas, arterial anomalies, cardiovascular anomalies, and abnormalities of the eye (PHACE) syndrome need information about neurodevelopmental outcomes to provide appropriate anticipatory guidance and education for parents. This study aimed to determine the neurodevelopmental outcomes in children with PHACE syndrome and identify which children may be at greatest risk for delays.
Children with a diagnosis of PHACE syndrome (ages 4-18 yrs) were recruited from the PHACE Syndrome International Clinical Registry and Genetic Repository. Participants (n = 25) underwent a neurodevelopmental evaluation at a children’s hospital tertiary care referral center between 2009 and 2013. Children completed standardized neurocognitive tests assessing multiple domains. Parents completed standardized questionnaires assessing behavioral and emotional functioning.
Results were analyzed according to cohort and individual subject. Mean scores for the cohort did not differ significantly from test norms in most domains. The only subtest that the cohort scored lower on than test norms was Word Structure, a language task. Forty-four percent of the sample scored within the normal range in all domains, 28% had one score in the at-risk range (1-2 standard deviations [SDs] below the mean), 12% had two or more scores in the at-risk range, and 16% had at least one score in the impaired range (>2 SDs below the mean).
Although most children in this cohort of patients with PHACE syndrome did not have significant neurodevelopmental deficits, a subset of patients had delays in multiple areas. Practitioners who work with these children should routinely ask about neurocognitive and developmental skills. Children with more severe phenotypes should be referred for appropriate evaluations and intervention services.

How Safe is Propranolol? (Article)

December 1, 2016 by  
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Dr. Denise Adams moves to Boston Children’s Hospital

April 13, 2016 by  
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NOVA Medical Director, Denise Adams, MD has transferred her practice to Boston Children’s Hospital. Dr. Adams has served as the Medical Director of NOVA since 2005 and has been an advisor to our organization since 1999. Dr. Adams can be reached at Visit our physician directory for more information on physicians.

2016 Research and Medical Updates

April 13, 2016 by  
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     In the 2011 years that NOVA has worked to assist individuals diagnosed with vascular anomalies there have been incredible advances in the science of vascular tumors and malformations. These scientific discoveries often lead to targeted therapies and treatments for patients. The relief on a parent’s face, when they discover there is finally a treatment for the pain and suffering their child has endured reminds us at NOVA of the important life changing work we have been involved in for over 2 decades now. Some of the latest scientific discoveries are listed here:

  Researchers at Memorial Sloan Kettering Cancer Institute have identified the PIK3CA gene in vascular malformations. This gene is a known cancer gene and its isolation in vascular malformations will lead to better treatments and therapies for patients. You can read the entire article on the MSKCI website:

   Another discovery this year has led us to a better understanding of Port Wine Stains and Sturge Webber Syndrome. Published in The New England Journal of Medicine, these vascular birthmarks have been linked to a single change in a single gene after conception. This genetic anomaly resulting in a PWS is known to affect about one in 300 babies, while Sturge-Weber Syndrome occurs in about one in 20,000 births. Advances in bioinformatics have helped identify when and where the molecular switch gets tipped. Jonathan Pevsner, director of bioinformatics at the Kennedy Krieger Institute in Baltimore, says: “It’s great because we have an immediate biochemical understanding of what’s happening, and that means we can immediately move on to the idea of what to do about it.” You can read the full article at



sildenafil for the treatment of lymphatic malformations.

April 9, 2014 by  
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Lymphatic Malformations can be very challenging for the clinician to treat.  Interventions include sclerotherapy and surgery are invasive and may result in complications and recurrence of the lesion.   A new study published in the Journal of the American Academy of Dermatology 2014 March 20 pii: S0190-9622(14)0119-0 examines  sildenafil generic for viagra to treat lymphatic malformations.

Patients were placed on 20 weeks of oral sildenafil, LM were assessed for volum and symptoms.  Sever male children and 3 females were observed; ages 13-85 months.  There was a therapeutic response of softening and compressiblity in all patients.  Adverse events were minimal.  A larger randomized controlled study is needed to better verify these results however; it seems sildenafil may reduce lymphatic malformation volume and symptoms in some patients.


Karla Hall


J Am Acad Dermatol. 2014 Mar 20. pii: S0190-9622(14)01119-0. doi: 10.1016/j.jaad.2014.02.005. [Epub ahead of print]

An open-label study to evaluate sildenafil for the treatment of lymphatic malformations.

Danial C1, Tichy AL1, Tariq U2, Swetman GL1, Khuu P1, Leung TH1, Benjamin L1, Teng J1, Vasanawala SS2, Lane AT3.

Author information

  • 1Department of Dermatology, Lucile Packard Children’s Hospital at the Stanford University School of Medicine, Palo Alto.
  • 2Department of Radiology, Stanford University School of Medicine, Stanford.
  • 3Department of Dermatology, Lucile Packard Children’s Hospital at the Stanford University School of Medicine, Palo Alto. Electronic address:

Summary on Propranolol

April 7, 2014 by  
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Just finished reading 6 Abstracts on the use of Propranolol in the management of Infantile Hemangioma.  All of the information came  from presentations at the 2014 ISSVA meeting in Melbourne, Australia last week.    A summary is below.  Much of the information is just now being published in the latest Medical Journals so it truly is the latest medical information on the subject.

Propranolol is a widely prescribed medication classified as a  beta-blocker used for the treatment of infantile hemangioma.  Since 2007 it has been used off-label because there has not been an approved formulation of propranolol, specific for infants and the treatment of infantile hemangioma.  Several institutions here in the USA and Europe have taken part in a 2+ year study assessing the safety of propranolol in infants.  As a result an oral formulation will be available here in the USA in June 2014 under the brand name Hemangeol.  (Pierre Fabre Pharmaceuticals USA will be manufacturing the medication)  The studies have not only produced a new brand name of propranolol here in the USA but it has produced data on the safety and efficacy of this medication in the treatment of infantile hemangioma.

Oral Propranolol has a favorable risk profile in the pediatric population studied.  In one study of  460 infants the IH improved in 88% of the patients treated with no unexpected safety concerns.   This same group reported that patients tolerated the medication with mild  or moderate side effects.  The only contraindication being noted is bronchial reactivity.  (1,2)

Another study examined the impact of propranolol on pediatric growth and human growth hormone levels in infants.  No impact was found. (3)

A group from Russia studied the effects of propranolol on the cardiovascular system with and without preexisting heart problems.  154 infants with IH were prescribed propranolol and cardiological evaluation with EKG, ECHO, holter monitoring and blood pressure was observed for more then 9 months.  Only a small percentage of adverse events were noted.  This group recommends monitoring children at risk for cardiac complications during use of propranolol.  A similar study out of Oregon concluded that routine ECG monitoring for patients prior to propranolol use is not necessary and a more purposed driven strategy is a better approach.  (4,5)

272 Hemangioma Patients were evaluated for developmental psychomotor skills.  No delays or effects on psychomotor development was found. (6)


In my review of this information propranolol appears to be safe to use in most infants and children presenting with infantile hemangioma.  Patients should be monitored during treatment and physicians should be awear of the indications for concern.  More studies are on going.


1.Christine Leaute-Labreze, Ilona Frieden, Pierre Vabres, Sorilla Prey, Jean-Jacques Voisard, Propranolol in IH: Results from an international randomized placebo controlled study.

2.Sorilla Prey, Christinen Leute-Labreze, Ilona Frieden, Allain Delarue, Jean Jacquez Voisard, Safety of oral propranolol for the treatment of IH: 2 years results of a controlled multicenter trial

3.Rachel Giese, Mario Cleves, Jessica Boswell, James Suen, Gresham Richter, Propranolol for Treatment of IH: Efficacy and Effect on Growth and Development

4. Margarita Timofeeva and Natalia Katlukova, Cardiovascular Complications of Propranolol Treatment for IH

5.Kevin Yarbrough, Alfan Krol, Julianne Mann, Sabra Leitenberger, Carol MacArthur, Is Routine ECG necessary prior to initiation of propranolol for treatment of IH

6.  Andre Moyakine, Denise Hermans, Joris Fuijkschot, Carine van der Vleuten, Development Milestone: no negative effects detected upon psychomotor development



As these articles get published we will update the references and citations.

Karla Hall

April 2014




NOVA Digital Newsletter

April 5, 2014 by  
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Stay Current with the latest happenings at NOVA- join our Digital Newsletter at:

NOVA is a 501c3a organization. All donations are tax deductible. NOVA was originally founded as Hemangioma Newsline.
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