2019 NOVA Newsletter

December 16, 2019 by  
Filed under Uncategorized

NOVA now has a new newsletter at Mail Chimp:

https://novanews.us3.list-manage.com/subscribe?u=d423bb4733907668886e4915b&id=4347ae3735

https://novanews.us3.list-manage.com/subscribe?u=d423bb4733907668886e4915b&id=4347ae3735

Giving Tuesday December 3, 2019

November 19, 2019 by  
Filed under Fundraising, Information from NOVA

 

“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 affected by:

* Hemangioma * Vascular Malformations *KHE *PHACE and many Syndromes related to vascular anomalies

 

* NOVA is setting up our end of year fundraising challenge to provide assistance to families affected by vascular anomalies.Through the generosity of our donors NOVA has been able to provide assistance to families for many years. Through our social media and PayPal our account we are requesting donors to support NOVA with a donation. $10, $20, $100 or any amount that will help us provide support, advocacy and educational assistance to infants, children, adults and families with vascular anomalies. NOVA is a 501(c)(3) organization. All Donations are tax deductible.

* NOVA is setting a goal of $10,000.00 for Giving Tuesday

* 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

What You Should Know about Venous Malformations

November 16, 2019 by  
Filed under Information from NOVA

• 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  
Filed under Information from NOVA

NEURODEVELOPMENTAL OUTCOMES IN CHILDREN WITH PHACE SYNDROME:
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
Abstract
BACKGROUND:
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.
METHODS:
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:
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).
CONCLUSION:
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.

NOVA and VBF Launch PHACE FB Page

December 1, 2016 by  
Filed under Social Media

After working together for 20+ years Karla Hall of NOVA and and Linda Shannon, PhD of VBF have launched a new social media Facebook page for those affected by PHACE Syndrome to communicate openly and share information. Both Women will monitor the site and answer questions as they come up. Visit the new page and start sharing with other PHACE Syndrome families.

https://www.facebook.com/phacesyndrome

How Safe is Propranolol? (Article)

December 1, 2016 by  
Filed under Information from NOVA, Treatment


http://www.aappublications.org/news/2016/09/29/safe-Propranolol-for-treatment-of-infant-Hemangiomas-pediatrics-0916?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3A+No+local+token

NOVA Blanket Campagin

December 1, 2016 by  
Filed under Events

Blankets for Babies with Hemangioma

Dr. Denise Adams moves to Boston Children’s Hospital

April 13, 2016 by  
Filed under Information from NOVA

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 denise.adams@childrens.harvard.edu. Visit our physician directory for more information on physicians.

2016 Research and Medical Updates

April 13, 2016 by  
Filed under Information from NOVA, Treatment

     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:  https://www.mskcc.org/blog/surprising-discovery-connects-rare-vascular-disease-cancer-gene

   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 http://zalea.com/article/15336/2016/03/31/the-science-behind-the-port-wine-birthmark?utm_source=Combined+Newsletter+List&utm_campaign=84acffbcf6-Weekly_Newsletter4_04_2016&utm_medium=email&utm_term=0_5615138614-84acffbcf6-367630497

 

 

sildenafil for the treatment of lymphatic malformations.

April 9, 2014 by  
Filed under Information from NOVA

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

Reference:

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: alfred.lane@stanford.edu.

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