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care for all ages – klippel-feil syndrome allianceMESSAGE FROM OUR EXECUTIVE DIRECTOR

In honor of our 2nd annual KFS awareness day, the staff of the KFS Alliance want to share our accomplishments with you since one year ago:

  • Facebook is a force to be reckoned with in the world of social  networks! We currently have tens of thousands of followers and  pages likes! This is a success that we all should be proud of!
  • The KFS Alliance now has 5 health care and research experts on KFS serving as our Professional Advisory Council (PAC) !
  • The KFS Alliance is now a “bonafide”  non-profit organization! We received our official  approval papers last month, so we can now participate in the full range of activities that other non-profit organizations do (research, awareness and program activities, and fund raising)
  • Our parent support group debuted in July, and has become very active!
  • Our website will be adding content (new photos, information pages, and email responses will resume). We’ve been busy getting our paperwork completed!
  • The KFS Alliance partnered with Sanford CoRDS patient driven registry on rare diseases.  If you have not yet added your information, please do so!
  • The KFS Alliance attended Rare Disease Awareness and Advocacy Day on Capitol Hill where we made many contacts in the House and Senate, many contacts in the rare disease community, and received a call from The Chicago Tribune to ask about KFS and the KFS Alliance! Yes!! Washington heard us speak!
  • Our Executive Director was asked to represent the KFS Alliance as a professional and parent advocate in the national rare disease community.  She will attend the Global Genes summit and gala black tie dinner in Los Angeles in September to support the rare disease community of organizations and to push forward, the KFS Alliance agenda.

 

Goals for 2014:

  • Complete the search for our PAC members
  • Organize and begin utilizing our PAC
  • Continue to participate in the rare disease community
  • Grow our online support groups and chat rooms
  • Continue to develop the research and resource sections of our website
  • Fundraise, fundraise, and fundraise some more!!

 

We are so excited about the activities to come which will keep us very busy! You, the KFSA community are central to those efforts and we hope to get you more involved with us very soon!

 

Alliance is key and it begins with “ALL”!

 

Please take time to acknowledge key members of our organization:

Carolyn Bayer – the mother of a young child with KFS, and research scientist with a PhD in biomedical engineering, is our Director of Research. Carolyn will initiate and lead the vital scientific research aspect of our work. Furthermore, she will help us develop the professional component of our website, and will lead our partnering efforts to develop a global KFS registry. This is a key part of our mission.

Andrea Hennig – my daughter – a young woman with KFS whose suffering inspired my efforts to co-found this organization, is a health care professional; but her career came to a halt one year ago, when she became disabled by complications of KFS. Andrea (Andi) will take an active role in the organization as our Director of Support Services and special projects.

Sharon Rose Nissley is a professional who has KFS, and like the rest of us, has a personal passion for this cause.

Please take a few moments when you peruse the website, to read the bio’s of our Professional Advisory Committee, composed of a voluntary group of internationally recognized medical and research professionals, who are devoting their careers to understanding KFS and how they can improve the lives of people affected by it. The PAC volunteers their time and expertise to the KFSA and its members to share vital research, and help push our agenda forward. We cannot have an organization without them, and we are so grateful for their commitment and generous contributions.

Finally, our deepest respect and admiration goes out to you, the KFS community (with a special thanks to the MD Junction KFS support group!) for helping to build the foundation for this alliance. You have been encouraging and supportive of the development of the KFSA every step of the way! Everyone is instrumental in creating a thriving alliance that is determined to bring forth change for those affected by Klippel-Feil Syndrome.

Lisa L. Raman
Executive Director and global health educator

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