The Atypical HUS Foundation

Len Woodward
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Len Woodward's Discussions

LINDA BURKE ENGAGES THE aHUS PATIENT WORLD

One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her reaction was to develop her own personal patient engagement.…Continue

Started Nov 9, 2016

EMPOWERING THE USA REGIONS

It is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do.In a long forgotten forum discussion, perhaps three years on this site, I contrasted…Continue

Started Mar 4, 2016

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I can appreciate what goes into starting and keeping an aHUS…Continue

Started Dec 26, 2015

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I can appreciate what goes into starting and keeping an aHUS…Continue

Started Dec 26, 2015

 

Len Woodward's Page

Latest Activity

Len Woodward posted a discussion

LINDA BURKE ENGAGES THE aHUS PATIENT WORLD

One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her reaction was to develop her own personal patient engagement. To learn and become informed about an illness is the bedrock of personal patient engagement. She looked around and there was little information of aHUS. She thought that was wrong.As the disease took it toll on her family,as it does for many of us ,she took upon her self the job of ensuring that no…See More
Nov 9, 2016
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"In nearly four years this forum has attained the most views on this site showing that that there is an adult agenda for knowledge and awareness about this disease. Whilst countries' advocacy increasingly goes local, resulting in new engagement…"
Nov 2, 2016
Len Woodward replied to Len Woodward's discussion aHUS Family History and North Devon
"With CFHR3 suggests anti factor h antibodies might be at play too, often related. Pennington is a surname that is seen in the area . There is a place near Wigan called Pennington too- a country park."
Aug 28, 2016
Betsy Pennington replied to Len Woodward's discussion aHUS Family History and North Devon
"My husband just got genetic testing results confirmed CFHR3.  His father's family is from the Manchester.  Last name Pennington.  "
Aug 16, 2016
Len Woodward commented on Jeff Schmidt's blog post Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!
"Protocols are different in different countries . Not all aHUS transplant patients need eculizumab and not all need it continuously . Using the best advice they could at least get started. Are they doing so. The others should be the long term focus…"
May 31, 2016
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"100 responses by USA to survey. Wow you did it. Foundation members speak up for aHUS."
May 1, 2016
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"Gasser Syndrome is what aHUS could have been known as ,in honour of the Professor who wrote  the term for the first time  on Baby Bodmer's  autopsy report back in 1954. I wonder what Conrad von Gasser would have thought today in…"
Apr 15, 2016
Len Woodward and Samantha Blaszynski are now friends
Apr 12, 2016
Len Woodward replied to Samantha Blaszynski's discussion aHUS and eculizumab
"You can see Kamal talkin in London on this video ▶ 15:58 https://www.youtube.com/watch?v=LkbFLrYwx2U"
Apr 11, 2016
Len Woodward replied to Samantha Blaszynski's discussion aHUS and eculizumab
"It was good to meet them too with such a surprising story which I have not forgot. I have said this before but it is a wonderful experience when aHUS folk meet up and everyone should take advantage of a regional meeting provided by the Foundation…"
Apr 11, 2016
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"Global survey due to close at midnight SST on 15 April just in case there are some last minute responses on Midway Island :-) if you have not done so yet please use link above to respond ."
Apr 11, 2016
Len Woodward replied to Samantha Blaszynski's discussion aHUS and eculizumab
"Samantha your blog ties in with two other discussions right now involving Kamal who is from India and leads patient organisation aHUS India"
Apr 11, 2016
Len Woodward replied to Samantha Blaszynski's discussion aHUS and eculizumab
"Hi Samantha I met Jacob's grandparents in Iowa back in. 2014 . It is good to know about his recovery because I know how difficult your situation was. But I believe BUPA was of help. Great to see you are championing access for eculizumab in…"
Apr 11, 2016
Len Woodward replied to Rebecca Redshaw's discussion Soliris: Stop or Continue?
"Good advice already to talk to doctors . there is someone in Minesota who had a stroke ( not seizure )and is on eculizumab still. I am not a doctor but I have heard complement plays a part in repurfusion injury which follows a stroke, like it does a…"
Apr 11, 2016
Len Woodward left a comment for Didi Kirsten Tatlow
"Thank you so much very much appreciated."
Apr 11, 2016
Didi Kirsten Tatlow left a comment for Len Woodward
"Hi Len, I remember you v well and hello again! I just completed and submitted the questionnaire. I do live in China but am perhaps not typical in the sense that when I had a flare in Dec. 2014 I was lucky enough to be able to get to Hong Kong for…"
Apr 3, 2016

Profile Information

Birthday
September 6
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
No
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

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Len Woodward's Blog

SEAN AND HIS PART IN aHUS RESEARCH

Just up from this new activity box there is a video of Prof. Judith Goodship. Standing next  to her is Sean who Tim Goodship referred to in his recent webinar as being  a survivor of a family blighted by aHUS and which led him to research aHUS and discover the Complement Factor H mutation. Sean has been on dialysis for 25 years but has recently had a successful transplant, supported by eculizumab. He is a Geordie and lives in Newcastle upon Tyne ( my profile pic is taken on the Tyne Bridge!)…

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Posted on August 12, 2014 at 3:38pm — 4 Comments

aHUS Patients appeal to the Prime Minister

Six aHUS patients family or carers went to Downing St this week to present a paper petition to the Prime Minister.

The petition called for him to tell the NHS to implement treatment for all aHUS Patients who need it immediately.

The 3000 signatures on the petition were raised in just five days! The public are supporting our call for justice

More pictures of the event and the aHUS Super Six can be seen by clicking…

Continue

Posted on March 29, 2013 at 6:29am — 6 Comments

Comment Wall (12 comments)

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Join The Atypical HUS Foundation

At 7:29am on April 3, 2016, Didi Kirsten Tatlow said…
Hi Len, I remember you v well and hello again! I just completed and submitted the questionnaire. I do live in China but am perhaps not typical in the sense that when I had a flare in Dec. 2014 I was lucky enough to be able to get to Hong Kong for very good (private) treatment. Eculizumab is not available in China last I checked and only privately in Hong Kong so one needs a good private health plan. My sense is that in China there is little awareness of the disease, though they know and can treat TTP. Excitingly, there is a rare disease Organization here but they didn't really know aHUS either. I was last in touch with them in about June 2015 so can update with them if there's interest. Kind regards! I'm so glad there's a survey! What's it for? For whom?
At 11:59pm on December 26, 2014, Linda Burke said…

I trust that you had a lovely Boxing Day, and wanted to let you know that I toasted the Woodward clan while I popped my Christmas cracker on December 25th.  And yes, I did wear my crown whilst serving holiday dinner to several extended family members!  Hope you're enjoying a wonderful holiday season....best wishes for a fabulous year to come!

At 10:27am on August 27, 2014, Kathy Jo Matlock said…
Len, it looks as though the Price's descended from Montgomeryshire, Wales. Montgomeryshire today constitutes the northern part of the principal area of Powys. Interesting. I'll look into the connection. Thanks!
At 10:13am on August 27, 2014, Kathy Jo Matlock said…
My maiden name is Price. The Price's are originally from Wales. I'm going to go check on that right now. We also have something called Lynch Syndrome. Both of my sisters have it as do 2 of their daughters. Their other children haven't been tested. We have a host of other autoimmune conditions in our family. My husband's sister has Wegener's. She was diagnosed in her early 30's. After being very, very ill , hospitalized in critical care numerous times, my husband donated a kidney to her. She rejected it fairly quickly but was "managed" and completely rejected after 18 months. In 2000 I donated a kidney & she's still healthy today! Many times I wonder if all of these things have a commonality...beyond being human! :) Thanks for replying! I'll be praying for you!
At 9:59pm on December 21, 2013, Cheryl Biermann said…

Hi Len, I just saw your daughter has been in the hospital.  I hope everything is back to normal and you can enjoy the beautiful Christmas season.  God bless you and your family.

At 9:23pm on December 20, 2013, Linda Burke said…

Hi Len,

Just checking in to see how your daughter is doing....hope that she's been released from the hospital, with one of the best Christmas presents EVER!

At 6:24pm on January 29, 2013, natalie furey said…

hi len im new to the site my daughter cheyanne was only disgnosed three weeks ago with ahus she was really poorly and we nearly lost her ,thankfully at royal manchester childrens hospital they got her eculizumab at ten oclock at nite two hours after admission and over the last three weeks its turned things right around,just wondering when is there next meeting ide love to come n contribute and comment on this miracle drug

At 5:30pm on November 22, 2012, clare smith said…
Hi Len,
Can't believe you saw the article in the enquirer! Our 15 year old nephew has recently done his work experience with the enquirer and they allowed him to do the article. He didn't do too bad, a few inacuurancies but not a bad job for his first go. I have since had another journalist ask if she can also cover our story.

We really hope to be at the meeting in Solihull but need to sort a sitter out for the children but as soon as I'm able to confirm I'll give Ian Macersie a call.
Would be so good to talk with others that have been through the same .
At 7:20pm on November 8, 2012, jemma kilty said…
Hiya thankyou so much. We will definitely be attending. Would you like me to ask her to contact you x
At 4:07pm on February 23, 2012, John Exton said…

HI Len

Thankyou for your kind welcome.

John

 
 
 

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

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