The Atypical HUS Foundation

Patient & Caregiver Advisory Panel

     The Patient and Caregiver Advisory Panel serves as dedicated vehicle for patients, parents, and caregivers to raise concerns and voice opinions about what really matters to those directly dealing with the multiple facets of an aHUS diagnosis. 

     Members of the Patient and Caregiver Advisory Panel serve as volunteers for a 2 year term, representing all cross-sections of the aHUS community.  This team has seven panelists who are selected in two ways, either by invitation from the leadership of Foundation for Children with Atypical HUS or by self-nomination.  The leadership of the Foundation for Children with Atypical HUS, along with the current membership of the Patient and Caregiver Advisory Panel, votes on new membership applications and current aHUS issues to ensure varied viewpoints. 

     We appreciate the guidance of our

Patient and Caregiver Advisory Panel Members:

Alyssa Deffenbaugh (term ends Dec. 2016)   College Student, aHUS Transplant Patient

Advisor to aHUS leadership regarding multiple areas including adult aHUS patients, Transplant concerns

Crystal Ferreira   (term ends Dec. 2016)  Caregiver (pediatric son), working Mom

Advisor to aHUS leadership regarding multiple areas including aHUS outreach, aHUS social media

Jodi Kayler  (term ends Dec. 2016)  Caregiver (pediatric son), working Mom

Advisor to aHUS leadership regarding multiple areas including Communications, aHUS Materials/Design

Heather Still  (term ends Dec. 2016)  Caregiver (pediatric son), working Mom/RN

Advisor to aHUS leadership regarding multiple areas including Family issues, access to treatment

New membership open*  (term begins Jan 2015 through Dec. 2017)

New membership open*  (term begins Jan 2015 through Dec. 2017)

New membership open*  (term begins Jan 2015 through Dec. 2017)

Interested in volunteering as a panel member?  Members of the Patient and Caregiver Advisory Panel must be well acquainted with the broad spectrum of needs and concerns of aHUS patients, caregivers, and family members.  New members are requested to submit a letter of interest noting their interest and background.  

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.

Questions for our Panel?  Contact info@atypicalhus.org with the subject Patient and Caregiver Advisory Panel.

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.

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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

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