The Kayleigh Ali Vascular Anomalies Research Fund is our everlasting commitment to find out why infantile hemangiomas occur, to help find better treatment options and to assist other children and their families who will encounter these anomalies.
Over the years the research fund has fueled some amazing results. The research is ongoing and we are making a difference with still so much more to do:
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2006 completed the first study on safety and efficacy of oral steroids and found that this treatment, although standard of care, was not highly effective in treating severe hemangioma
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2006 a study to determine which types of babies were at risk for developing internal and liver hemangiomas
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2007 the above data was used to apply for and receive a 1.3 million dollar grant to study hemangioma treatment-first formal clinical trial ever!
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2008 a new drug became available which worked better and was safer-oral propranolol
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2009 worked with a drug company to design clinical trial to test this drug and make sure it was safe
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2010 the research team, with 10 other sites, developed consensus derived guidelines for the use of the medication-it was so new and it had not been used in such little babies before
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2014 FDA approves the first drug ever to treat infantile hemangioma-we had drugs in the past but none had been studied formally
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2016 started a clinical trial funded by NIH of a cream treatment for skin hemangiomas
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An eleven institution research network called the Hemangioma Investigator Group (HIG) was created. This group has published >75 peer-reviewed articles since 2007 on how to better care for babies with hemangiomas.
Our donations have supported several of the above listed studies and have helped support the research staff
"Together I believe this work has saved thousands of babies"
Beth Drolet, MD UW- Madison Professor and Chair, Geneva F. and Sture Johnson Distinguished Chair