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.

 

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

************************

NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service