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We spoke recently with Joyce Wilcox Graff, founder and Executive Director of VHL Family Alliance. Von Hippel-Lindau (VHL) is a rare genetic condition causing the abnormal growth of blood vessels. Graff has also served on the Board of Directors of NORD from 2000-2009. We discussed the VHL Family Alliance and its use of the VHL/Inspire community. Here are excepts of the interview:
Inspire: Tell us about the VHL Family Alliance and its mission.
Graff: The Alliance is a group of people affected by VHL, plus the physicians and researchers in our community. We get everybody together and we share information and we try to make progress in managing this condition. When we first got together in 1993, we said what we want most is a cure. But realistically it was going to take about 30 years to get to that cure, so we're probably still about 15 years away. And, while we're working toward the cure, we have a lot of people dealing with a lot of tumors, and we need better ways to manage our health. We've probably gained one year of life expectancy for every year that we've been together. It's literally that powerful.
Inspire: What made you want to create the VHL Family Alliance Support Community?
Graff: From the beginning, people would ask, "Can we get in touch with other people with VHL?" and we started having meetings in 1994, but there was a tremendous amount of anger and misinformation in our community in those days. We felt we needed to first get people on track before we let them talk to each other willy nilly because they were just going to disseminate bad information. So, it was several years before we started a Yahoo! group in the late '90s and we did that for about five years before we moved to Inspire.
Inspire: Have you seen an overall change in the community?
Graff: The community has matured a lot. In the old days, it was us moderators trying to straighten out information. These days, if somebody puts out a call for help in the community, four or five people have already answered that call before one of the moderators even sees it. It's great. It really has become a very nourishing community.
Inspire: What would you say are the underpinnings of what makes your community strong? Is there more a focus on clinical information sharing, or support, or referrals to medical resources?
Graff: All of the above.
Inspire: Do you use the Support Community and other social media as a way to assess your members' concerns, and if so, how do you do it?
Graff: Yes, we monitor the community. We want to know what issues they are raising that concern them. In the 1990s, we were the ones who told the doctors that there was a connection between hearing problems and VHL. On our telephone hotline back then, people were telling us they were dealing with a lot of hearing problems. One of my hotline volunteers herself had lost hearing in one ear overnight when she was 19 and the doctors could never explain it. We started calling the experts in the world and asking them, "What do you know about VHL and hearing?" And the answer was, "Nothing." Next thing we knew, after we made all our calls, a researcher at NIH started polling VHL patients about hearing problems and they discovered there is a very teeny tiny little tumor that can occur in the inner ear that can destroy your hearing overnight. And now we know how to find it and we know how to treat it. And so, it's pretty amazing.
Inspire: That's a powerful anecdote, and it really speaks to the connections you have with the medical community.
Graff: This is that symbiotic relationship we've managed to create with our physicians and researchers. We share information, and it flows both ways.
Inspire: How do you make social media actionable?
Graff: One of the problems I see with social media is that it tends to get fractionated. If topics are carved up into too many pieces, many people are watching each of those pieces, both nobody is watching all of them. What we're trying to do in response is to channel topics into a smaller number of places. We have an awareness group on Facebook, and we have the group on Inspire, which tends to operate on a more medical level than the awareness group. We try to keep the awareness group kind of light, and talk more about fundraising and educational issues, but in Inspire we talk about the best treatments for "x."
Inspire: What role will social media channels play for VHL as you move closer to that cure?
Graff: It will continue to play a key role in disseminating information and finding good options for tricky medical situations. When people come up with something new, to know where go quickly. If you have a tumor on the pituitary gland, which is very rare, and your doctor never heard of this, and there's only one paper in the medical literature, then who can you talk to about it? We usually can steer people to the one researcher in the world who is most likely to take that ball and run with it. It's good for the researcher too, because we're feeding him more of these rare patients from, well, anywhere. We know people (with VHL) in 106 countries.
If you'd like to nominate an association for the Partner Spotlight feature, contact Inspire's Communications Director, John Novack.
Here are a half-dozen popular blogs that focus on association management:
Know of others? Add to this list by contacting Inspire's John Novack and look for updates in future editions of the Community Update.
Did you know that 501(c)(3) organizations may be eligible to receive free advertising from Google? The Google Grants program, founded in 2003, donates advertising to nonprofits focused on a variety of issues, including health. Grantees use Google's AdWords system to promote their mission with ads that appear in Google search results and on other sites that are part of the AdWords network.
There are a number of guidelines to be aware of before applying. For example, ads must link back to the grantee's Web site, and the AdWords account must be actively managed to "make the most of" the grant. If your organization has the resources to manage such a program, Google Grants may be a great way to promote it. You can learn more at http://www.google.com/grants/.
If you have ideas for future columns, email me at firstname.lastname@example.org.
Twitter is regularly described as a critical communications channel for businesses--or a faddish waste of time. How can you make it more the former, and less the latter? Try these three quick tips:
We are proud to announce our newest partner, the National Psoriasis Foundation. Founded in 1966, the Foundation is the leading patient advocacy group for the 7.5 million Americans living with psoriasis and psoriatic arthritis. It is the world's largest patient advocacy organization for people with psoriasis and psoriatic arthritis. Connect with the Foundation on Twitter by clicking here.
If you are interested in starting a community, please contact Amir Lewkowicz.
Founded in 2005, Inspire is the leading provider of online patient community solutions. Inspire provides safe, secure, and engaging online communities for patients, their caregivers, and their families, through collaborative technologies. By enabling those affected by medical conditions to seek out and help one another, Inspire fosters vibrant, effective, and close-knit social networks. For additional information, please visit www.inspire.com. Contact us at email@example.com.