The Atypical HUS Foundation

aHUS SPEAKERS' Committee

Our Speakers’ Committee

Representing The Atypical HUS Foundation

 

     As an integral part of our organization’s mission, we provide a variety of assets and information about atypical hemolytic uremic syndrome.  Along with resources and support, the Atypical HUS Foundation offers insight into the challenges of this ultra-rare disease that daily face aHUS patients, families, and caregivers through its online community.

     Since 2012, The Atypical HUS Foundation has partnered with NORD and Global Genes to provide aHUS regional meetings that provide information and support.  We are grateful to the speakers noted below, whose have dedicated time and effort to providing information, outreach and support to other members of our aHUS community.  We appreciate the collaborative approach by multiple organizations, groups, and individuals to assist our efforts to create meaningful programs regarding aHUS advocacy and rare disease awareness.

Special thanks to members of our Speakers’ Committee:

          Jonathan and Beth Aguallo

          Cheryl Biermann

          Anne Bruns

          Linda Burke

          Alyssa Deffenbaugh

        Lisa Grooms

         Barbara Farcher

       Crystal Ferreira

          Melissa Hearn

          Donna and Jonathan Kolp

        Diane Schaller

         Dana Simone

         Phyllis Talbot

          Jill Ziegler

 

Interested in becoming a Speaker representing The Atypical HUS Foundation?

     Members of the aHUS Speakers' Committee are actively involved with The Atypical HUS Foundation in various aspects such as contributing content to our official Facebook page, creating Home Page Blogs about aHUS topics, creating a maintaining a special interest Forum, or regularly contributing to our foundation’s website to add insight for our online aHUS community. 

     Members of the aHUS Speakers' Committee offer formal presentations about The Atypical HUS Foundation to include key goals of our organization, its mission, and the resources we provide to support, inform, and connect patients, caregivers, and  their families.

     In addition to their presentation, speakers assist with promotion before their event (encouraging participation with this and other events), giving visibility to the event as it occurs (with Facebook posts or Twitter tweets), and creating a post-event blog about the speaker's event on the Home Page of this website.

     Members of the Speakers’ Committee must be well acquainted with the broad spectrum of needs and concerns of aHUS patients, caregivers, and family members.  Committee members serve at the discretion of aHUS leadership, and persons interested in becoming a Speaker should submit a letter of interest* to Linda@atypicalhus.org

     Members of the Speakers’ Committee are expected to have a deep background in aHUS advocacy, past attendance at previous aHUS meetings, knowledge of aHUS online resources (both American and in other nations), and have strong public speaking skills. We appreciate that many people have compelling stories about their personal journey with diagnosis and the many challenges that each face, but sharing personal stories is not the function of the aHUS Speakers' Committee. Members of the aHUS Speakers' Committee present informational material about our organization, its mission, and resources that can support patients and their families. 

*This letter of interest should outline the perspective member's depth of involvement with various aspects of aHUS outreach, education, and advocacy efforts.  (Suggested details regarding your involvement with aHUS issues might include: dates of aHUS meetings attended, Rare Disease Day or aHUS projects, involvement with aHUS or general state/national/international advocacy efforts, participation with rare disease organizations such as RareConnect, NORD, or Global Genes, samples from your blogs or webpages, and participation with www.atypicalhus.org.  Letters of interest submitted to linda@atypicalhus.org will be reviewed by aHUS leadershp.

*Preference given to new member panelists representing these areas :  Adult with aHUS, Caregiver/Spouse of an aHUS adult, Transplanted aHUS Patient, Patient/Caregiver with a background regarding Dialysis Issues.

 

 

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