"A short update on aHUSUK:
the Patient Voice submission will take place throughout April. 14 people will be interviewed including patients carers and family members. The final report will be reviewed by aHUSUK in early May and a…"
Len Woodward's Discussions
aHUS Family History and North Devon
Just as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS patients who need it, I am starting this discussion topic.It is becoming evident that the…Continue
Started Mar 13
Len Woodward's Page
Latest Activity
Len Woodward replied to maria vicenta carratala rios's discussion Split liver in ahus kid"Hi Maria
Thank you for the update.
Good luck with your plan to have a Spanish aHUS Patients Conference.
The UK patients event was a pivotal moment as far as aHUS was concerned in the UK . Without it nothing would have happened and…"
Len Woodward replied to maria vicenta carratala rios's discussion Split liver in ahus kid"Hi Maria
Sorry for the delay in replying. We were at the Newcastle upon Tyne Conference too and I remember your husband and son as well .
So far in this discussion it does seem that no one can see a justification for this…"
Len Woodward replied to Donna Kolp's discussion The Future"Wow that is something. It is amazing how gaining an understanding of the immune system and then being able to manipulate it can produce beneficial results. Research can only enhance this for the future!
"
Len Woodward posted a discussionaHUS Family History and North Devon
Just as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS patients who need it, I am starting this discussion topic.It is becoming evident that the part of the UK which seems to be a bit of a "hot spot" for aHUS, and the classic CFH genetic defect in particular, is North Devon in the west of England.Although I am not from there myself I have ancestor who was born there and who is almost certainly the one who passed it on in my family having…See More
Len Woodward commented on Linda Burke's blog post Feb 29th is Rare Disease Day"Well that was a rare leap year's day.
Stayed up to see Linda's talk but at 1am could not hang on for the TBs.
Congrats to Linda and all for the effort in marking the day."
Len Woodward commented on Linda Burke's blog post Feb 29th is Rare Disease Day"Hi
Looking forward to tonight’s (it will be 11pm here) event!
Three bits of Rare Disease Day News from the UK
Great Ormond Street Hospital announced, at one minute past midnight, that they are planning to build and equip an extension to the…"
Len Woodward replied to maria vicenta carratala rios's discussion Split liver in ahus kid"A translation of the above by my friend Carmen in Denmark!
Hola María,
Estoy de acuerdo contigo.
Un transplante combinado hígado rinón, aunque sea algo poco común es una opción para aquellos que sufren…"
Len Woodward replied to maria vicenta carratala rios's discussion Split liver in ahus kid"Hi Maria
I think I agree with you.
A combined liver kidney transplant although rare is an option for those with kidney failure and aHUS.
Split liver transplants are not uncommon and effective for those with a failed…"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"An up date on eculizumab in Scotland.
Disclosure on the Scottish Medicines Consortium website reveals that it is not recommended.
aHUSUK is looking into the reasons given for that view."
Len Woodward left a comment for John Exton"Hi John
Welcome to the site you will soon see there are others from the UK here to!
There has been a lot going on in the UK, if you have followed the UK Patients Forum thread you may have gathered that!
The aHUSUK community is growing with…"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"Also written to the BBC Radio to ask for Tricky Britches song " A Rare One" to be played on Rare Disease Day.
You never know!"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"A quick update on aHUS matters in the UK:-
The e petition has been going up by leaps and bounds recently and is now just short of 2200 signatures. Given the more popular issues ( with the media) we do well to keep it ,with a small but active…"
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)
Len Woodward's Photos
Comment Wall (3 comments)
- At 4:07pm on February 23, 2012,
John Exton said… HI Len
Thankyou for your kind welcome.
John
- At 8:54pm on October 7, 2011,
Cheryl Biermann said… - Hi and welcome! Hope you find our site informative as well as a great way to keep connected to your UK friends as well as those around the world!
- At 6:13pm on October 7, 2011,
Linda Burke said… Hi Len,
Thanks for stepping up to post regarding the aHUS activities in the UK. You're most welcome to create a UK Forum, helping your UK patients/families gather in a central location and acting as a 'meeting place' online. Best, Linda
WELCOME - Friends, Family Members, Patients, and Researchers - 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...
• • • • • • • • • • • •
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 end the tragedy and heartbreak 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 the Foundation for Children with atypical HUS atypicalHUS.50megs.com
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:
Atypical aHUS Foundation
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