August 2005 Archives
William Oliver Ripken
Contribution of Roberta Whalen
A month ago I published here the story about Jack Hagelin from New Jersey who also has a NEMO mutation. Since then I've been in contact with Roy and Charlotte, Jack's parents and I offered them a website for Jack hosted on a internet server thanks to the generosity of the company I work for (Ekonom/Ekomercio/Ekofon).
Dr. Jordan Orange is responsible for finding Jack's NEMO mutation (search this blog for articles related to Dr. Jordan Orange here).
Jack is having a stem cell transplant in January 2006, he's lucky to have a compatible donor. In the meantime Roy and Charlotte are raising money to cover the incredible amount of medical bills they are and will be receiving.
Help find a CURE 4 JACK!
And leave a message at Jack's new guestbook.
I stepped on Andy's foot and caused a minimal fracture.
And I feel bad..
He didn't even say ouch.
He's so used to pain.
Andy has to wear a strap-on boot for two weeks. It's a minimal hairline size fracture on his right foot.
Harvard Stem Cell Institute
August 22, 2005:
A new study by Kevin Eggan, Douglas Melton, and colleagues offers hope that it might be possible in the future to produce embryonic stem cells without using human embryos. The Harvard Stem Cell Institute researchers will report in the Aug. 26 edition of the journal Science that it may be possible by fusing two cells together to some day produce cells with the properties of embryonic stem.
More via Harvard Stem Cell Institute here.
More news from the Harvard Stem Cell Institute here.
Of stem cells, what would Gandhi say?
By Pankaj Mishra The New York Times
MONDAY, AUGUST 22, 2005
...
American scientists and businessmen note enviously that religious and moral considerations do not seem to inhibit Indian biotechnologists. But this indifference to ethical issues would have certainly appalled Gandhi, father of the Indian nation. Gandhi accused Western medicine, along with much of modern science and technology, of inflicting violence upon human nature. His vegetarianism and belief in nonviolence were derived from Indian traditions, mainly Hinduism, which is also the faith, though loosely defined, of most Indian scientists and businessmen.
...
Read the complete article via IHT here.
Doctors have been given permission to screen a woman's embryos for a rare form of eye cancer.
Angela Donovan had retinoblastoma as a child and passed on the gene to her first son, Kieran, who underwent chemotherapy to get rid of the cancer.
Fertility experts at University College Hospital London will test her embryos to prevent any of her future children from contracting the disease.
Critics say screening should only be used for non-curable illnesses.
The move comes just days after the government launched a public consultation about the future of fertility treatment and embryo research.
Read the complete article via BBC here.
Muchas gracias Esteban Manteca,
Abrazos 'papachentos y muy cariñosos' recibidos.
Pulseras live immune aqui.
Check out the new Main South at Children's Hospital Boston:
"Home to state-of-the-art intensive care units, cutting-edge surgical suites, and more room and amenities for patients and families."
But best of all Andy's name is written on Main South steel beams. Check the pictures below and a map with location of the building.
More about Main South here.
Her immune system (that happens to be the same as Andy's...) is kicking the coxsackie virus butt!
Her worst day was Friday.
Turns out that all the nighboors (3) have it. Andy is still safe (knock on wood).
Ethan Rossi was diagnosed with Acute Lymphoblastic Leukemia when he was six months old, he had a stem cell transplant 149 days ago and he's doing "quite well'. His dad Brian and mom Carolyn keep a very cool online blog called the Rossidudes.
With lots of video and up to the minute updates,
Brian Rossi will do the Boston Marathon Jimmy Fund Walk and you can contribute at their Fundraising Page.
Hand-Foot-Mouth Disease, Herpangina
Ulcers that appear in the mouth, in the back of throat.
She seems to have a headache.
High fever.
Pain in the mouth and throat.
Drooling.
Decrease in appetite.
Were told that the incubation period can be anywhere from 2 days to 10 days. It can live on surfaces.
Regarding Andy,
He's not out of the woods yet regarding infection of this virus. We're told that in general this is not a virus that would be expected to cause severe illness at this time post-transplant.
Thank you Dr. Pai & Dr. Sachs.
Hay un artículo el día de hoy en el periódico Reforma sobre donación de médula ósea con el título "Invitan a donar médula ósea". El artículo indica que en México solamente somos cuatro mil personas registradas.
Leer artículo Reforma aquí (suscripción)
La primera vez que llame al Donormo fué en Febrero/Marzo del 2002 buscando un donador compatible con Andy. Yo me acabé peleando con la Dra. Gorodesky, era imposible hablar con ella via telefónica y en ese entonces sólamente había tres mil personas registradas. Eso quiere decir que en tres años y cinco meses (1250 días) sólamente se ha incrementado el registro en mil personas, menos de una persona diaria.
El problema es claro, la Dra. Clara Gorodesky, directora y fundadora del Donormo no sabe promoverlo ni administrarlo; lo administra como boutique. Por ejemplo: En el artículo en el periódico Reforma el Donormo publica dos números telefónicos, el 5341-4569 y el 5341-4880.
Acabo de marcar al 5341-4569,
Despues de 10 tonos contesto una senora,
"Gueno, gueno"
"Hablo al Donormo?"
"Gueno, gueno" contesto de nuevo la señora.
Ha de ser alguien de limpieza.. pense.
"Si, hablo al Donormo?" pregunte de nuevo.
"A ver permitame..."
Despues de cinco minutos otra persona contesto el telefono.
"Bueno"
"Si, hablo al Donormo?"
"Ah si Donormo, habla al INDRE del Donormo." me dijo esta persona.
"Me quiero registrar" le dije.
"Registrar como altruista?"
"Si registrar como donador de médula ósea." le dije.
"AH no han llegado las personas que hacen esto. Aceptamos donadores con cita." me dijo el señor.
"Oiga y si quiero registrarme en Monterrey?" le pregunte.
"No pues tiene que hacer cita con las secretarias y venir a registrarse. Es con cita." me contesto.
El artículo de Reforma dice que diariamente dieciseis personas necesitan de un transplante de médula ósea en México. No se de donde saquen esa cifra pero si son dieciseis diarios entonces multiplicado por transcientos sesenta y cinco nos da cinco mil ochocientos cuarenta personas al año. Dudo mucho que esas personas encuentren donador compatible en esos cuatro mil registros..
En www.andy.org.mx se han registrado más de cien personas aqui. Lo que hago es referir a esas personas al Donormo... Tristemente sospecho que ninguna de esas personas han logrado registrarse. Han de llamar al Donormo y escuchar puro "gueno, gueno".
Porqué no tiene un número 800?
Porqué no pone una grabación con las instrucciones para registrarse?
Porqué no hay puntos de registro en todo el país?
Porqué se le da tan poca promoción?
Porque no hay instrucciones de registro en la pagina web?
La excusa es que no hay dinero y que no hay conciencia en México. Pero yo sigo convencido que la Dra. Gorodesky usa el registro para promocionar su propia imágen, la imágen del 'gueno, gueno'. Probablemente lo hace sin querer pero ha de ser tambien sin querer que no se da cuenta que la vida de muchas personas depende de que encuentren un donador compatible.
Si hago una búsqueda en Google de la palabra "Donormo" la primera página que aparece es andy.org.mx
Me parece increíble que yo haga más promocion al Donormo que el propio Donormo... Y todo para que contesten "gueno gueno".
Aqui abajo se puede hacer el experimento escribiendo "Donormo", también se puede escribir "Clara Gorodesky" y aparecerán artículos de este blog (en ingles) de mis discusiones del 2002 y 2003 con ella.
Hey! I just visited the Stem Cell Transplantation website at Children's Hospital Boston new website and our picture is shown there.
Cool!
I also found Dr. Pai's website:
Here are some facts about the stem cell transplantation program I didn't know about:
+ Established in the 70's, we are one of the largest, most established pediatric stem cell transplantation centers in the United States.
+ In 2004, we performed more than 70 pediatric stem cell transplants, making us the most active program in New England.
And others facts I did know about:
+ Our program focuses on addressing the unique needs of children and adolescents undergoing stem cell transplantation.
+ The Dana-Farber Cancer Institute and Children's Hospital Boston partnership provides comprehensive, in-depth care by teaming pediatric stem cell transplantation experts with pediatric medical experts from more than 30 subspecialty areas. Our patients have access to the newest advances in radiology, oncology and intensive care.
+ Our nursing staff is very experienced and has completed special training to care for young cancer patients. Each patient has a primary nurse and team who provide individualized nursing care throughout the patient's stay on the stem cell transplantation unit as well as in the outpatient setting.
+ We have a staff of support specialists, including pediatric psychologists, child life specialists, nutritionists and social workers, all of whom provide support for the child and family throughout the process of transplantation.
+ Our facilities have been recently renovated, resulting in a beautiful, state-of-the-art 13-bed stem cell transplantation unit at Children's and an 18-bed outpatient center at Dana-Farber.
+ For families traveling to Boston, we can provide housing at our local Ronald McDonald House or at Children's Devon Nicole House.
+ We offer many family support services to help parents during their child's admission to Children's, including support groups for parents and siblings, psychological and pastoral support, access to social workers, and a resource specialist dedicated to assisting you with any needs that may arise.
My current word count is 123,564
Whats the page count?
Industry standard preferred length is 250 words per page.
My unedited book is 494.26 long.
I should be able to finish in about four weeks.
In the meantime there are good news about a publisher in Mexico that showed some interest.
And also the first decline from my first agent query,
Not to worry, good things happen when people tell me no.
GEORGE QUENTIN DALEY, MD, PhD
Associate Director, Stem Cell Program at Children's Hospital Boston
Associate Professor of Pediatrics, Children's Hospital Boston
Associate Professor of Biological Chemistry and Molecular Pharmacology, Harvard Medical School
"Science certainly cannot define when in the gradual course of human development we deserve individual and autonomous rights. I do not agree with the premise that the single celled zygote should be given the same considerations as living persons and I do not view the embryo as a human being, particularly when it is frozen in a freezer. As a physician and as a scientist and as a father I live in a practical world of choices, and a world in which disease is a grim reality. Unless we want to turn back the clock, and outlaw in vitro fertilization, then we as a society have already accepted that many more embryos are created than will ever become children. I feel it is morally justified to derive benefit from these embryos through medical research instead of relegating them to medical waste. And unless we are willing to argue the biological absurdity that our humanity can be defined by a particular signature of gene expression that exists in the totipotent cells of the early human embryo, then we must support the vitally important applications of embryonic stem cells to medical research."
"If my wife and I carried a genetic disease we would accept the risk of the embryo biopsy procedure to insure we could have the healthiest child possible, but if we were simply infertile and using IVF to assist us in reproduction, we would not consent to having our healthy embryos biopsied; we would chose instead to donate our excess embryos to stem cell research."
Taken from the testimony by George Q. Daley, MD, PhD to the Appropriations Subcommittee on Labor, Health and Human Services, Education Hearing on "An Alternative Method for Obtaining Embryonic Stem Cells" July 12, 2005
Read the complete testimony via Children's Hospital Boston website here.
I found Andy & Kelli's picture at the new website. Just next to where it says Children's runners raise $949,000
And here's a bigger picture,
People from New York, New Jersey, Pennsylvania and Maryland have MAPIN, Middle Atlantic Primary Immunodeficiency Network. MAPIN offers direction during the journey with primary immunodeficiency.
Dr. Jordan Orange and Katie Orange are supporting MAPIN.
Visit MAPIN website here.
If you search here you help Andy.
How does this work?
The set of search results and advertising is provided and hosted by Google. Google delivers search results and search-targeted ads. If you click on these ads, Google shares the revenue with the web publisher (Andy).
This is a story I've been following about the UK first 'designer baby'. She was born on July 14, and the first story came out a few days later.
Designer baby is a perfect match
New hope for sick tot Joshua
By Nigel Gould, Health Correspondent
04 August 2005
AN Ulster mum was jubilant today after finding out that her little girl - the UK's first designer baby - is an identical genetic match for her sick toddler son.
....
"It's great news," Julie told the Belfast Telegraph. "We were told that there was an exact match. Now we wait and see what happens."
Now that the siblings are matched, the Fletchers are hoping a unique transplant can take place next year.
...
The next stage will be to establish whether doctors have enough stem cells required to carry out the transplant.
"At the moment we do not know if enough stem cells were collected," Julie said. "My understanding is that it was only one third of what was expected. We simply have to wait and see if this is enough."
Read the complete article via Belfast Telegraph here.
Karen Barrow from ABC News Healthology section on their website talks about PGD.
Read the article here.
According to this study 10% of survivors of a bone marrow transplant experience impairment in functional, social and emotional areas and 90% go on to lead successful and productive lives.
Read the article via Reuters here.
