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lorenzo1977 01-29-2010 03:20 AM

More Information on VBF..
Hi, I would like more information on VBF. Mainly I would like to know if this foundation also supports Canadian families, and is support limited to information only or does VBF also support the families financially?

I don't know how it works in the USA, but here in Canada PWS treatment is considered cosmetic surgery and it's very expensive.

My e-mail address is Any info on how VBF works would be appreciated.

Thank you.:)

missy 01-29-2010 12:30 PM

VBF is a global organization that supports families all over the world. our goal is to educate and support, but we cannot provide financial support to families. We network people to the appropriate doctors to get appropriate treatment.

We offer things like the annual conference, where patients can be seen by multidisciplinary teams. We offer the monthly call in chat, where patients can ask questions to a physician who is trained to deal with vascular birthmarks. We have this site, where we have over 30 volunteer experts to answer questions, and where we can offer emotional support.

But we regret that we cannot offer financial assistance.

If you have any more questions, let me know.


lorenzo1977 01-29-2010 05:14 PM

Is there any reason why VBF cannot offer financial assistance?

Just trying to figure out why VBF would be a good charity to donate and raise money for?

Thank you for your quick response and time.

missy 01-29-2010 11:47 PM

If we tried to offer financial assistance, we would have a hard time deciding on which family to offer it to. We simply don't have the funds to take on so many families and the costs can really be exorbitant.

Instead of providing financial assistance, we provide assistance in dealing with insurance issues, so that insurance companies will pay for appropriate treatment. We have also intervened in extreme cases to find resources for travel expenses, getting doctors to donate their services, etc.

VBF is the first organization to provide resources for families dealing with vascular birthmarks. We not only educate parents and families, but Dr. Linda has spoken at medical schools and we help distribute information to medical students and physicians alike, so they are more likely to treat vascular birthmarks in the correct way.

Between the conferences and the various programs, we network a lot of people into treatment each year. And it does cost us money to run these programs.

Linda Shannon has literally given her life to keep this foundation going. She eats, sleeps, and works VBF and has put together a foundation that keeps offering more and more to our families each year. We have chapters all over the world now and every week, I hear from every continent except antartica!!



abatie 01-30-2010 03:15 PM

I am just happy to have VBF as a place to share my story and read other stories of families in situations similar to mine. This has been one place I can turn to during everything that my family has been through in the last six months where people understand. I don't personally know any other families dealing with CMTC because it is so rare and this website makes me realize that we aren't the only people dealing with this.

missy 01-31-2010 12:29 AM

Well, thank you much for chiming in. Yours is an unusual case, certainly, and we're glad we can be here for you. That's what the site is for, that's what this foundation is all about.


lorenzo1977 02-01-2010 01:07 AM

Thank you Missy for clearing up some doubts I might have had.

I greatly appreciate what VBF does. I currently live with a pws on the right said of my face, so I can relate very well with the members of this site.

Thank you again your information is very much appreciated.

nickbar 02-02-2010 06:40 PM

Many of the doctors we work with do have foundations or funding to help with hardship cases. As Missy stated we legally cannot provide funds for medical tx. There are helpful tips on helping with financial concerns. Angel flights, fundraising ideas, organizations that can pay for care, etc.

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