The Foundation for Children with Atypical HUS

Share your video in support of Rare Disease Day!

Alone we are rare…together we are strong.

It's not just the slogan for the global campaign marking Rare Disease Awareness Day on February 29, 2012. It's also the rallying cry for "SOARING VOICES" a grassroots effort by patients, friends, and families who meet the challenges of a rare disease diagnosis with grace, dignity, and a positive attitude.

EURORDIS, the European Organization for Rare Diseases, defines a disease or disorder as rare when it affects fewer than 500 in one million of population (Orphan Drug Regulation 141/2000). An ultra-rare designation is generally considered for rare diseases that affect fewer (sometimes far fewer) than 20 patients per one million of population. In the United States NORD (The National Organization for Rare Disorders) helps the nearly 30 million Americans with rare diseases through programs that empower, educate, and support patients and patient organizations, though estimates indicate perhaps there are 350 million people worldwide affected by rare diseases. Many rare disorders and diseases are severe, chronic and progressive, and have serious impact for not only the patient but also their whole family. Compounding the seriousness of rare diseases is a lack of scientific knowledge, issues with diagnosis, limited treatment options, and little opportunity to connect with other patient families who share the same diagnosis.

Watch Tricky Britches at performing their uplifting and original bluegrass song "A Rare One", and learn about opportunities for rare disease patients to gain information, inspiration, and support through the network of Rare Disease Patient Communities, a joint initiative of NORD and Eurordis. Amazingly about 1 in 10 people suffer with a diagnosis of a rare disease, but since so few individuals compose each of the approximately 7000 rare disease groups, we are largely an invisible and unseen patient population.


Join the discussion at www.rarediseasecommunities.org – if your particular rare disease is not currently represented, NORD and Eurordis will create a new patient community. A free global networking opportunity to gain information and support, these disease-specific communities include current research, conference details, and patient viewpoints offered within a moderated, reliable site with translation across 5 languages. Help give rare disease patients a voice – encourage us to gather in a visible community where we can share our stories, access information, and create a supportive community connected to research and hope for a brighter day. How?

The SOARING VOICES project asks you to create a video clip or slideshow that informs, enlightens, and uplifts... showing the beauty in life and laughter. While patients with rare diseases don't live charmed lives, we can create 'charmed moments' to gather and be heard around the world – providing moments of grace and humor, while demonstrating the power of love and strength in our commitment to find solutions. Make Rare Disease Day, Wednesday, February 29th shine – submit your video or slideshow to NORD and Eurordis for our global upload to YouTube to honor and give support to rare disease patients and their families. The Soaring Voices project welcomes slideshows or videos from organizations, researchers, hospitals, service clubs, medical personnel, and other companies or groups that have an interest in rare disease issues. Atypical HUS families can upload your videos to our Rare Disease Day YouTube channel.

Rare disease patients often hear, "What can I do to help?" from friends and family members – usually we feel powerless and have no way to channel those kind intentions. Joining our voices removes rare disease patients from isolation, and their struggle to find meaning while feeling alone with a diagnosis of a rare disease. Instead, gathering together into a community gives patients a strong voice to express their point of view, allowing millions of rare disease patients to unite and connect with purpose.

Think of ideas that can illustrate the Rare Disease Day theme, "Alone we are Rare, Together we are Strong!" Plan your video or slideshow to express your feelings, share your story, support your friend/family/rare disease group, or highlight your work/volunteer effort/organization. Our Soaring Voices project is not a contest, nor does it have a bunch of guidelines to follow – just amaze us with your innovative approach to rare disease awareness that builds on these few components:

  • Keeping with the Rare Disease Day theme, "Alone we are Rare, Together we are Strong!" illustrates that concept of moving from 'isolation/aloneness' to 'community/connectedness' throughout your project.
  • Please download Rare Disease Day graphics, or our Soaring Voices poster and include it in your video or slideshow – or display these graphics during your filmed public performance piece. "A Rare One" by Tricky Britches is available for download at CD Baby (with an instrumental version as well). Song lyrics are available in EnglishFrench, and Spanish.
  • Offer a strong message for rare disease awareness, with your original video or slideshow entry (5 minutes or less). Add info about your disease, group, company, or organization. Let your point of view shine through!

Be creative. Add meaningful content with a positive twist. Together we'll increase awareness of rare diseases across the world by creating innovative and positive messages about patients and families meeting challenges. Our voices will soar and offer hope - patients and their families can connect with the rare disease community network at www.rarediseasecommunities.org , a linking hub of disease-specific information, and support. Our focus with Soaring Voices is to deliberately and joyfully choose to turn our faces to the sun – so shine your light and smooth the path for rare disease patients and their families with your participation.

________________________________________________________________________________________________


Sponsored by The Foundation for Children with Atypical HUS (co-founders Bill and Cheryl Biermann). Soaring Voices was created by Linda Burke, founder of www.atypicalhus.org.

We gratefully acknowledge the videographic talents of director/producer Randy Visser, Sue Raftice, and their crew. Thanks to Local Sprouts café in Portland, Maine for hosting the Tricky Britches video shoot, to Tim Tierney and "A Rare One" CD audio production staff at The Studio in Portland, Maine.

Our special thanks to Tricky Britches for their inspirational song, "A Rare One". 20% of the net proceeds from the $1.29 purchase price ofthe CD Baby vocal downloador instrumental version of "A Rare One" byTtricky Britches goes to support patients with rare diseases through these five organizations: (Status as 501(c)(3) charitable organizations).  Each song download donation is shared among: Songs of Love www.songsoflove.org, the R.A.R.E. Project www.RAREproject.org, Grahamtastics Organization www.grahamtastic.org, the Foundation for Children with Atypical HUS www.atypicalhus.org, and NORD and Eurordis patient programs through www.rarediseasecommunities.org. (Status as 501(c)(3) charitable organizations)

Our appreciation to Steve Greene and Alpha Marketing for their continued efforts and support of www.atypicalhus.org and rare disease families.

Views: 370

Tags: Eurordis, NORD, RDD, RareDiseaseDay, Soaring, SoaringVoices, TrickyBritches, Voices

Comment

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

Comment by Jonathan Aguallo on February 6, 2012 at 10:32am

Thank you Linda... loading them right now. Thanks for all you do...

Comment by Linda Burke on February 6, 2012 at 9:57am

Please upload your video or slideshow to both the international Rare Disease Day site at http://video.rarediseaseday.org/yourstory/video, where NORD/Eurordis staff will post your SOARING VOICES video for you, and also post your slideshow or video to our aHUS YouTube Channel.  Directions to post on our dedicated aHUS Soaring Voices channel at http://www.youtube.com/user/aHUSrarediseaseday can be found at http://alphamarketing.com/ahus/rarediseaseblog/rddblog_012512.pdf  (Step by Step Directions, in gray portion at end). 

Thanks to all who participate - SOARING VOICES is sponsored by our aHUS community to raise awareness of rare disease issues.  February 29th is global Rare Disease Day, please spread the word via FaceBook, blogs, etc!

 

Comment by Jonathan Aguallo on February 6, 2012 at 7:53am
Linda, I have a video to post. I might need to help. I uploaded to YouTube but couldn't figure out how to upload to the Rare Disease YouTube channel....

IN REGARD TO MEMBERSHIP REQUESTS

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

The Foundation for Children for Children with Atypical HUS 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 Linda@atypicalhus.org

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

WELCOME - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


Badge

Loading…

© 2014   Created by ALPHA MARKETING.   Powered by

Badges  |  Report an Issue  |  Terms of Service