Help us Heal our Community
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Our Moebius syndrome community is hurt and fractured. It has been in spiraling downward since shortly after the MSF hired an Executive Director who has no ties to Moebius syndrome and very little experience working in a rare disease community.
The powers that be wont listen to community members who voice their own opinions. Even when they have the documented evidence to back up their claims.. They are labeled as attackers and bullied.
The MSF will not listen to any concerns regarding their Executive Director. When people share their feelings on the subject their comments are deleted. People are being thrown out of groups for speaking their minds and / or receiving bullying emails. One MSF board member has stated that he will not support anyone or any community organization who will not support their Executive Director who has very little experience working with a rare disease community.. For more information on this please follow this link. http://www.moebiussyndrome.info/community-concerns.html
"If liberty means anything at all, it means the right to tell people what they do not want to hear!" - George Orwell
We want the MSF to agree to work with the MFOMS and form an investigative committee comprised of people who do not have ties to any Moebius organization. The investigative committee will be overseen by Vicki McCarrell from the MSF and Tim Smith from the MFOMS. They will look into all claims against the Executive Director and others. They will make recommendations on how to solve these problems and how they can be avoided in the future.
Until the committee has completed their investigation Kim Cunningham the Executive Director of the Moebius Syndrome Foundation needs to be removed from all Moebius syndrome community related matters and decision making. Including her lead role in the Moebius Conference Planning Committee. We recommend she be given a paid leave of absence or given admin assistant work only.
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