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Tony Silva
- Male
- Kitchener, Ontario
- Canada
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Tracy MacIntyre left a comment for Tony Silva
Hi Tony,
Sorry it has taken me so long to get back in touch with you but things are busy. The meeting was very successful and we have to decide to create an advocacy group in Canada for this disease. If you can provide me with your email address, I…
Linda Burke left a comment for Tony Silva
Hi Tony,
I know you expressed an interest in attending Dr. Licht's Feb 19th meeting with Canadian aHUS parents.... Did you have an opportunity to go?
Tony Silva left a comment for Tracy MacIntyre
Hello Tracy,
I wanted to introduce myself and perhaps speak with you sometime in the near future.
My name is Tony Silva (Kitchener, ON) and my son passed away with AHUS a few year ago (he was 1 1/2). I've been in touch with Dr. Licht a few…
Sara Palmer left a comment for Tony Silva
Thank you for the Dragonfly Story, Linda kindly pointed me to it on a very difficult day - its a beautiful way of thinking about how our little ones are enjoying their new life.
Cheryl Biermann left a comment for Tony Silva
You betcha! All these kids and we're the only ones who trick or treat - plus we're kind of out in the country by the dairy farms so the road is dark and spoooooooky!
Tony Silva left a comment for Linda Burke
Thanks Linda.
Did you guys enjoy Halloween?
Tony Silva left a comment for Heather Still
Thanks Heather.
its great to hear from you again.
hope all is well with you also.
Tony
Cheryl Biermann left a comment for Tony Silva
Great photo, Tony.
Heather Still left a comment for Tony Silva
Cute photo....glad to finally see one. Hope all is well with you and your family.
Linda Burke left a comment for Tony Silva
Cute photo!
Tony Silva updated their profile photo
Tony Silva commented on Jodi Kayler's blog post 'Calling for Notecard Inspiration!'
Hi Jodi,
We've always used the symbol of a dragon fly since our son Noah passed away. We find the story one that brings us hope...
Once, in a little pond, in the muddy water under the lily pads, there lived a little water beetle in a community…
Tony Silva updated their profile
Profile Information
- Birthday
- January 23
- 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?
- Yes
- My child ( or myself as a patient) is best described as:
- Question Does Not Apply To My Situation
Comment Wall (10 comments)
- At 8:49pm on March 9, 2010,
Tracy MacIntyre said…
- Hi Tony,
Sorry it has taken me so long to get back in touch with you but things are busy. The meeting was very successful and we have to decide to create an advocacy group in Canada for this disease. If you can provide me with your email address, I will link you in with the group and hopefully you will be able to attend the next meeting and maybe even pitch in and help.
Thanks so much for your interest and hopefully we will be able to connect over the next couple days.
Tracy
- At 11:58pm on February 21, 2010,
Linda Burke said…
- Hi Tony,
I know you expressed an interest in attending Dr. Licht's Feb 19th meeting with Canadian aHUS parents.... Did you have an opportunity to go?
- At 3:20am on November 7, 2009,
Sara Palmer said…
- Thank you for the Dragonfly Story, Linda kindly pointed me to it on a very difficult day - its a beautiful way of thinking about how our little ones are enjoying their new life.
- At 12:53am on November 5, 2009,
Cheryl Biermann said…
- You betcha! All these kids and we're the only ones who trick or treat - plus we're kind of out in the country by the dairy farms so the road is dark and spoooooooky!
- At 12:34pm on November 4, 2009,
Cheryl Biermann said…
- Great photo, Tony.
- At 7:35am on November 4, 2009,
Heather Still said…
- Cute photo....glad to finally see one. Hope all is well with you and your family.
- At 11:55pm on November 3, 2009,
Linda Burke said…
- Cute photo!
- At 11:40pm on June 24, 2009,
Linda Burke said…
- Hi Tony,
I've been watching for your photo and for your family's story - looking forward to learning how things have been in your world. Best, Linda
- At 11:18pm on June 12, 2009,
Linda Burke said…
- I'm looking forward to catching up, friend. An email should already be in your inbox... :)
- At 10:40pm on June 9, 2009,
Linda Burke said…
- Hi Tony- it's good to see your name on the website! My brother,Steve Greene, and his great staff at Alpha Marketing created this interactive website for our aHUS families to share information, stories, and encouragement as we cope with our situations. It was only in concept stage when Hunter died last May, so we're grateful that the site is up and running to provide support for aHUS patients and their families.
I'm looking forward to catching up since last we talked was the AHUS Parents Conference held at the U of Iowa in December 2007. You're more than welcome to post pictures of Noah and tell of your journey with him. I'm sorry to say that our other son Skyler, Hunter's little brother, was diagnosed with active aHUS 10 months after Hunter's death. Skyler is doing well on Soliris, given every two weeks via IV infusion, with lab values at or near normal. Since his diagnosis on March 26th, 2009, Skyler got Soliris soon enough to halt the hemolysis and kidney function therefore remains excellent. Looking forward to your blogs, photos, or whatever you care to share. 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 "About aHUS" tab 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
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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