Fundraiser for Fanconi's Anemia - Muffin Top Designs Up for Auction
>> Tuesday, April 8, 2008
I was approached by the lovely Karen Granofsky, co-chair of Fanconi Canada, an organization that raises funds to conduct research for Fanconi's Anemia. She asked if I would be interested in donating some pieces to their silent auction, which is a part of their 2008 fundraiser.
Regular transfusions; androgens (male hormones) with or without steroids; blood growth factors (such as G-CSF)
I had never heard of Fanconi's Anemia before, so Karen sent me a link to their website and I did a little research, that I thought that I would share.
From the Fanconi Canada website:
"Fanconi Anemia (FA), first described in 1927 by a Swiss pediatrician Guido Fanconi, is the most common of the inherited anemias that lead to progressive, severe bone marrow failure, also known as aplastic anemia. The effects of the disease are devastating, leaving patients weak, prone to severe bleeding due to insufficient blood clotting and susceptible to infection. FA is a genetic disorder that occurs equally in males and females and is found in all ethnic groups. Though considered primarily a blood disease, it may affect all systems of the body. A Fanconi Anemia patient often, but not always, has other physical defects detectable at the time of birth ranging from minor to serious. Patients are also at an increased risk for developing leukemia and other cancers. Many children do not survive to adulthood.
Currently, there is no cure for FA. However, the following treatments are currently available to treat the bone marrow failure:
Regular transfusions; androgens (male hormones) with or without steroids; blood growth factors (such as G-CSF)
While these can cause remission of the bone marrow failure, eventually patients fail to respond and develop severe aplastic anemia. Androgens in particular can cause serious side effects.
Bone marrow transplant
Bone marrow from a healthy donor is introduced into the patient's body after the patients own defective marrow has been destroyed by chemotherapy and radiation. This procedure can permanently reverse the marrow failure; however, it a very risky procedure which is only available if a patient has a suitable donor.
Gene Therapy
Still at the experimental stage, gene therapy attempts to introduce a normal copy of the defective FA gene into a patient's blood cells. There are at least eight laboratories in the U.S., Canada and Europe that are working on gene therapy for FA
Birth defects are found in the majority of FA patients. These defects can involve any system of the body. The defects are sometimes many in number, or very few. There seems to be no predictability about the types of anomalies, even within families where more than one child has FA.
Among the more common birth defects are the following:
Short stature
Thumb, hand and arm anomalies
Skeletal abnormalities of the hip and spine
Kidney problems
Skin discoloration
Small head or eyes
Low birth weight and failure to thrive
Digestive tract abnormalities
Heart defects
Mental retardation"
Among the more common birth defects are the following:
Short stature
Thumb, hand and arm anomalies
Skeletal abnormalities of the hip and spine
Kidney problems
Skin discoloration
Small head or eyes
Low birth weight and failure to thrive
Digestive tract abnormalities
Heart defects
Mental retardation"
It took me by surprise how widespread this disorder is, and how it affected both males and females, of all cultural backgrounds. So many children are affected by this disease, and I am so privileged to be a part of their 2008 fundraiser. They have raised over $250 000 for Fanconi's Research over the past 8 years, and are looking forward to raising more in 2008.
On Sunday, April 27th, 2008, Karen and her colleagues at Fanconi Canada are having a fabulous fundraiser! Not only are they having a silent auction, but they are also having a three course meal and entertainment by the Ron Davis Quartet! I have sent several pieces, including the Swarovski ring pictured above, to be part of the auction.
You can find out more about Fanconi's Anemia and the Toronto Fundraiser at the website:
Thanks so much, Karen, for finding me and letting me be a part of this!
4 comments:
What a great cause!
I hope your piece does well!!
Wow, that sounds like a very scary disease, a great cause for you to support. Way to go!!!
How very scary! Kudos to you for contributing!
how kind of you to donate, it certainly sounds like a good cause. And the new look for your blog looks good too!
: )
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