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  • Maryland and Iowa Chapters Join National Hemophilia Foundation | HemAware
    appreciated the new collaborative approach Val Bias is from the grassroots arena and I thought the changes he implemented made the prospect of rejoining with NHF more appealing Gates says One of the aspects Gates is particularly interested in is NHF s state advocacy program We believe that the expertise that NHF possesses will help us as we try to implement Standards of Care legislation in Maryland he says NHF has a lot of legislative expertise and resources we can use to galvanize the Maryland bleeding disorders community to go out and be heard about issues important to us For a smaller all volunteer chapter such as Hemophilia of Iowa joining NHF as an affiliated chapter was an easy decision to make says President Brian Unruh The board of directors was made up of many people from the bleeding disorders community with a variety of experience but running a nonprofit wasn t one of them As we ve continued to grow it became clear we could benefit our families better if we could be more efficient have more resources and be able to network and share ideas with all the chapters he says Top on the list of Iowa s plans for the future is developing a three year strategic plan which will outline the goals of the organization and include specific steps on how to achieve them Iowa received a grant from NHF that will enable it to work with a consultant in conducting a needs assessment survey soliciting information from Iowa s consumers industry representatives and hemophilia treatment center Another crucial component of creating the strategic plan is applying NHF s chapter standards The standards were helpful for not only giving us a way to discover what it is that we do well but also finding out what

    Original URL path: http://www.hemaware.org/story/maryland-and-iowa-chapters-join-nhf (2016-02-18)
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  • Building Community Online | HemAware
    media should have in place Our chapter already had a Facebook page with about 100 followers but with limited activity We created a Twitter account and started a weekly blog which now serves as our central source for sharing content and inviting participation The blog provides our community with an inside look into the chapter To encourage participation every post ends with a question asking for reader feedback When possible incentives such as free meeting or event registration are a great way to increase blog participation Since implementing a social media plan and policies we have nearly doubled our Facebook fans increased our Twitter following by 150 and dramatically increased our Web site traffic I encourage chapters looking to create or improve their social media plan to first listen and learn from your stakeholders Share resources beyond your organization don t just tweet or post about your organization or focus only on asking for money Demonstrate the impact of donations and volunteer time through stories featuring community members Be prepared for and open to dissent when it occurs Social media is only one tool in our toolbox when serving the bleeding disorders community it is not the tool Using social media in combination with other strategies will help your chapter increase participation develop trust between you and your community and eventually raise funds Emily Davis is the executive director of the Colorado Chapter of NHF She has a master s degree in nonprofit management MNM from Regis University in Denver View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders

    Original URL path: http://www.hemaware.org/story/building-community-online (2016-02-18)
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  • Five Chapters Join NHF | HemAware
    of four of the new chapters left to right Kari May Idaho Emily Davis MNM Colorado Kristi Harvey Simi Nebraska and Rob Alexander Central Ohio The five merged chapters Colorado Idaho Nebraska Nevada and Central Ohio will give up their 501 c 3 IRS nonprofit status and come under NHF s 501 c 3 status Their current bylaws will be supplanted by NHF s Merged Chapter Procedures and Guidelines which were developed by a working group of board members of the merging chapters By joining NHF the chapters will have increased access to NHF staff for finance development and marketing and communications needs including Web site and social media development Our chapter chose to merge with NHF because we understood that NHF has the ability to support our area in a way that s better than what we ve been able to accomplish on our own says Kari May executive director of the Idaho Chapter in Boise Nicole Rainey executive director of the Nevada Chapter in Las Vegas agrees Our new relationship will allow Nevadans to have better information on their bleeding disorder she says It will give us more tools to provide educational programs and seminars geared to our consumers and their specific needs Rob Alexander executive director of the Central Ohio Chapter in Columbus is looking forward to NHF support in areas in which his chapter isn t as experienced such as marketing and grant writing The greatest benefit is that we go from having the resources that you typically find in a two person shop to the resources you have in a 40 person company he says For Carl Clark board president of the Nebraska Chapter in Lincoln maintaining financial stability while retaining the chapter s independence is crucial Funds raised by the local chapter will stay

    Original URL path: http://www.hemaware.org/story/five-chapters-join-nhf (2016-02-18)
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  • 2010 NHF Chapter Recognition Award Recipients | HemAware
    an insurance problem soon after her son was born She attended her first Annual Meeting when her son was 18 months old With no family history I wanted to be educated about hemophilia so we could live a normal lifestyle she says I got very involved with my local chapter and have volunteered nonstop What chapter projects she helps with Thomas who has only missed one NHF Annual Meeting in 25 years served on her chapter s board for 12 years including as vice president and then as president for five years She was very active in the chapter s advocacy efforts lobbying for guaranteed issue for small group insurance in Florida which was implemented in 1990 Thomas also lobbied for the Ricky Ray Hemophilia Relief Fund Act of 1998 She was camp director for Dream Oaks Camp for four years What she likes best about her volunteer work I like that I could meet other families and help them to lead an independent lifestyle Thomas s son is fit and athletic and shes like showing new families that their children can lead an active lifestyle too I enjoy letting other people see that yes hemophilia is a chronic illness however it s very manageable What she would tell other families about getting involved with their local chapter They should be involved for education In Florida we have an annual meeting and we have about 400 families come every year They can learn from the guest speakers about nutrition exercise sports but it s also important to meet industry representatives Families need to understand the different products so they can make educated decisions What the chapter executive director Debbi Adamkin says about Thomas Linda has dedicated so many years to the chapter lending her expertise fighting for legislation helping other families We value her commitment and dedication to our chapter and the community Hemophilia of North Carolina Sue Fletcher PhD MSW MA Chapel Hill North Carolina Sue Fletcher with her daughter Marcie Foster Connection to bleeding disorders Fletcher was diagnosed with hypodysfibrinogenemia a type of factor I deficiency She has both bleeding and clotting problems How Fletcher became involved in the chapter After years of bleeding problems Fletcher was diagnosed three years ago and attended her first women s retreat through the chapter I got heavily involved with the chapter immediately What chapter projects she helps with Fletcher is the chapter s research and special programs coordinator She has a PhD in social work and an advanced degree in gerontology expertise that has helped her write several grant applications for the chapter including those for research on aging and hemophilia In fall 2010 she helped create Support Outreach Advocacy and Resources SOAR the chapter s program for girls and women with bleeding disorders SOAR gatherings have allowed women in the community to develop close friendships It s been great for the women in the chapter Fletcher says We re realizing more and more women need a place to talk The

    Original URL path: http://www.hemaware.org/story/give-and-thank (2016-02-18)
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  • Illinois Chapter Builds an Online Community | HemAware
    use your limited resources to maintain strong content to hold your audience The way I envision it the Web site is the mother ship and the social media outlets are your fishing poles to try to attract new clients and funders The Web site Facebook and Twitter are simply other ways to build relationships with people When you connect with people through social media you re starting a conversation Do you use Facebook and Twitter for fundraising Our Walk Twitter feed was the first thing we created We did a fun countdown leading up to the Walk with an interesting fact about bleeding disorders each week We listed how many people and Walk teams we had registered Our media and business partners were very interested in that Hypothetically speaking if a business sees that you ve got an event that has 5 000 participants it is going to see it as a good marketing opportunity You might not get 50 businesses interested but you might get a few And it gives you a chance to start that conversation and build that relationship How has social media benefited HFI It connected us with new people Three days after we had our Walk Twitter feed up we had three teams created When we saw that we asked Who are these people and why aren t they involved with HFI It turned out that a full third of our Walk teams were new families we had never had contact with before They didn t know how to find us and we certainly couldn t find them until we were able to do it via social media What advice would you give chapters interested in using social media Take one thing at a time Don t be overambitious Don t say We re going

    Original URL path: http://www.hemaware.org/story/social-factor (2016-02-18)
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  • Ryan White’s Mom Leads Indiana Hemophilia Walk | HemAware
    HIV AIDS awareness What do their names mean in your community So much of the work of the Ryan White Foundation and Jeanne in particular has been to promote acceptance of people with HIV AIDS It s only recently that Jeanne has begun to get involved with the bleeding disorders community This is something she really cares about She wants to engage the community on all levels at the local level with chapters at the national level and with industry Jeanne was the spokesperson for your Walk What did this entail Jeanne gave us permission to use her likeness We put her and Ryan s picture on all our advertising and promotional materials including some billboards Our local talk radio station WIBC did an interview with her that aired twice a week before the event She was also interviewed on our local NBC affiliate WTHR We wouldn t have had that level of publicity had she not been involved What has her message been Jeanne spoke about Ryan having hemophilia and the difficulties with his treatment She talked about the need for research and treatment She also spoke about the need for women and young girls to be more aware of von Willebrand disease She said everything we could have hoped for her to say about the bleeding dis orders community This is your chapter s second Hemophilia Walk but the first with Jeanne as a spokesperson What was the difference Jeanne enabled us to reach out beyond the bleeding disorders community and make contacts with other organizations such as the Children s Museum of Indianapolis which has an exhibit on Ryan see Museum Features Ryan White HemAware May June 2008 p 16 With her involvement we could step outside our regular sponsors and engage other constituents I know she

    Original URL path: http://www.hemaware.org/story/Indiana-hemophilia-walk (2016-02-18)
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  • Central Ohio Chapter raises money with Rick Springfield concert | HemAware
    his very active fan club But the coolest thing he did was let us raffle off a guitar that he signed backstage at the show He provided that guitar to us for what it cost him which saved us a lot of money Between the guitar raffle and the merchandise sales we added an extra 2 300 to our bottom line How did you promote the event The venue where we held the event has a good relationship with all the promo managers of all the radio stations around here We gave the stations a set number of tickets to give away to their listeners and they talked about it a certain number of times on the air The value of this airtime was more than 100 000 The venue staff really helped us out tremendously They created and placed ads in newspapers in the Columbus area They even created a television commercial which we ran during General Hospital which Rick Springfield used to be on It was amazing to hear the buzz in Columbus during the week leading up to the show Fans sporting Jessie s Girl shirts at the meet and greet How was the concert itself It was a very cool thing to be backstage and to meet Rick Springfield to see a line of people that curled around the block waiting for the doors to open and to look out at a crowd of more than 1 000 people and realize it was for our chapter The concert itself was a huge success The women absolutely went nuts for Rick especially when he went out into the crowd and came out for his encore shirtless Will you do this again next year Yes but we don t know who we re going to pick or what

    Original URL path: http://www.hemaware.org/story/rick-springfield (2016-02-18)
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  • Virginia hemophilia chapter develops interactive play | HemAware
    bleeding dis order The play The X Factor focuses on hemophilia The first act is educational explaining what hemophilia is how blood clots and what factor does The second part is about acceptance told through a fable The third part is called The X Factor Art Xtravaganza and includes a song I wrote Each part has audience participation The third part has volunteers playing instruments singing taking pictures using art to empower themselves Does it have appeal outside the bleeding disorders community Steve I wanted this show to translate into a wider audience which is why I made hemophilia the theme of the day I wanted to make the audience feel that hemophilia is just one of the many topics that The X Factor covers The acceptance and empowerment messages really can resonate for everybody How did the performance at VHF s Annual Meeting go Audience participation is part of Steve Kohrherr s one man play about hemophilia Kelly People thought it was educational they thought it was fun they really liked the audience participation They thought Steve was incredibly energetic and interactive There were people there who really didn t know anything about hemophilia Their response was Oh now I get it Where else will you perform it Steve We presented it at our camp this summer and we ll present it at NHF s Annual Meeting in New Orleans in November We ve also talked with a local theater group and we re trying to figure out how to do it in the larger community I think there s lots of growth opportunity How can other chapters access this program Kelly There are two ways One is for Steve to travel to the chapter event and perform the play The other option is to have the chapters perform

    Original URL path: http://www.hemaware.org/story/play-right (2016-02-18)
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