May 2007 Archives
Congratulations!
Simon celebrates six months post transplant!
This from Simon's Mom:
Celebrate today with us as it marks our six month post transplant on our calendar. We are very blessed to say we have managed to stay home, be together, watch Simons immune system heal and hopefully start to stabalize and stay strong and steady going forward for all the long days of his happy lifetime.
More here.
This via de AFP.
STOCKHOLM, May 28, 2007 (AFP) - Swedish authorities have granted three families the right to screen embryos to create a child who can be a stem cell donor for a sibling with a deadly illness, officials said on Monday. The Swedish National Board of Health and Welfare has approved the highly-controversial procedure for three families whose children risk dying unless they receive a transplant of healthy stem cells from a sibling with a tissue match. Under the procedure, an embryo is tested in vitro for a desired genotype before implantation into the uterus, in what is called preimplantation genetic diagnosis (PGD). That has been allowed for some time in Sweden, in particular to screen for single-gene diseases such as cystic fibrosis as well as chromosomal abnormalities such as Down's Syndrome. But for the first time authorities will allow the embryos to be screened to find a tissue match for a sick sibling, in a process called human leukocyte antigen testing (HLA). "The PGD procedure has been used in Sweden for years but it is the second stage of the process, the HLA, that is now being allowed," Goeran Wennergren, professor of pediatrics at Gothenburg University and one of the experts who evaluated the applications, told AFP. After the child is born, stem cells from its placenta and umbilical cord are transferred to the sick sibling. Once in the bone marrow, the stem cells will start producing blood cells. These are the first cases in Sweden to be granted the procedure following a law on genetic screening that came into force in July last year. The procedure has been criticised by some who consider the screening process unethical. PGD/HLA treatment has already been used in the United States, Belgium and Turkey, Wennergren said. Each individual case in Sweden has been scrutinised by the board to make sure they comply with the law, and the Board of Health and Welfare has also received statements by medical and genetic experts. "I put in a lot of work before making my decision and spent a lot of time thinking about this. It wasn't a very difficult decision to make once I analysed all the information," Wennergren said. Wennergren said he expects there to be one or two applications for PGD/HLA treatment a year in Sweden.
For Children's Hospital Boston
WOW
And what a ride!
Quest to find Rhys, 6 a bone-marrow donor
May 14 2007
by Madeleine Brindley, Western Mail
PATIENTS are dying because not enough people have registered as potential bone- marrow donors. Only about 10m people worldwide are registered as potential bone-marrow donors – 60,000 live in Wales. There is also a dire shortage of male donors, who can provide larger amounts of blood stem cells, on the register. The stark warning comes as one family faces a race against time to find a suitable match for their six-year-old son. Rhys Harris, who suffers from the rare genetic disease Nemo, desperately needs to find a good match to give him a chance of life. His family, from Newbridge, are hoping to arrange a bone marrow drive in Cardiff, in a bid to find a match. A spokeswoman for the Anthony Nolan Bone Marrow Trust said, “At any one time, there are approximately 7,000 children and adults throughout the world needing to find a suitable bone-marrow donor. “This means that the Anthony Nolan Trust has an urgent need to recruit more donors to increase our chance of finding a suitable lifesaving match for these patients.” A bone-marrow transplant is vital for Rhys’ treatment – if a match can be found his own immune system will be killed off by chemotherapy. Rhys will undergo the treatment in Newcastle, spending nine months in an airtight room while his new immune system grows. But no exact bone-marrow matches have yet been found and time is running out – experts gave Rhys just 12 to 18 months to live, six months ago. His father Kevin said, “It is really tough, especially having to put a six-year-old through chemotherapy and a life-threatening process. “But to know that he might not even get to that stage is even worse. “The doctors have told us that they would rather be dealing with a happy, strong boy like Rhys is now, than a very, very sick child. “We are really up against it – the longer we leave it, the more chance the doctors have of having to deal with a very sick child.” Suitable bone-marrow donors are difficult to find because they must have hundreds of factors in common with the patient. Donors must match six different factors, but within each of these factors there are hundreds of variations. Only 30% of patients who need a bone-marrow transplant are a “match” with a family member, meaning the vast majority of patients rely on anonymous donors. It is thought that people do not come forward to put their name on the register because of “myths” surrounding the donation process, including how painful people imagine it can be to donate. But joining a bone-marrow register only involves giving a teaspoon-sized amount of blood to be tissue typed. Trudi Evans, recruitment publicity manager for the Welsh Blood Service, which recruits existing blood donors to its bone-marrow register, said, “On our own register we find at least another four new tissue types that we have never seen before every week. “With only 60,000 people in Wales on the registers, it is very important that people come forward to join. “I have one daughter who is a nurse. When we searched the registers for potential matches for her, there was just one person who could help her. “That made the hairs on my neck stand up – I couldn’t imagine life without her. While we can find some matches, a lot of people do not have that opportunity and we are losing them purely because of that.” The Anthony Nolan Bone Marrow Trust can be contacted on 020 7284 1234 and the Welsh Blood Service on 0800 252 266.
More via cure4rhys.org here.
Article here.
I spoke to 1,300 philantropists last Thursday at the Children's Circle of Care Leadership Conference and Gala Dinner.
More info here: http://www.cccmembers.info
Definition of Philantropy: The origin of the word philanthropy is Greek and means love for mankind. Voluntary giving by an individual or group to promote the common good.
I promised Andy that I would start my presentation with a Rooster sound.. and I did..
