January 2007 Archives
I heard about Giovanni in the news a couple of weeks ago..
And I received an email today from Michael Guglielmo, the father of Baby Giovanni who was just diagnosed with NEMO yesterday.
We talked on the phone, he's looking for information about NEMO, he said he's had a hard time finding information about the disease...
Here is Dr. Orange's latest NEMO article:
IL-1-induced NF-kappa B1 activation is NEMO-dependent but does not require IKKbeta. Activation of NF-B by the pro-inflammatory cytokines TNF and IL-1 requires the IB kinase (IKK) complex that contains two kinases named IKKa and IKKss and a critical regulatory subunit named NEMO. Although we previously demonstrated that NEMO associates with both IKKs, genetic studies reveal that only its interaction with IKKss is required for TNF-induced NF-B activation. To determine whether NEMO and IKKa can form a functional IKK complex capable of activating the classical NF-B pathway in the absence of IKKss we utilized a panel of mouse embryonic fibroblasts (MEFs) lacking each of the IKK complex subunits. This confirmed that TNF-induced IBa degradation absolutely requires NEMO and IKKss. In contrast we consistently observed intact IBa degradation and NF-B activation in response to IL-1 in two separate cell lines lacking IKKss. Furthermore, exogenously expressed, catalytically inactive IKKss blocked TNF- but not IL-1-induced IBa degradation in wild-type MEFs and reconstitution of IKKa/ss double knock-out cells with IKKa rescued IL-1- but not TNF-induced NF-B activation. Finally we show that incubation of IKKss-deficient MEFs with a cell-permeable peptide that blocks the interaction of NEMO with the IKKs inhibits IL-1-induced NF-B activation. Our results therefore demonstrate that NEMO and IKKa can form a functional IKK complex that activates the classical NF-B pathway in response to IL-1 but not TNF. These findings further suggest NEMO differentially regulates the fidelity of the IKK subunits activated by distinct upstream signaling pathways.
I didnt understand either....
I ran 13 miles today.
It was around 13 degrees Fahrenheit (-10 degrees Celsius) and it felt like -20 degrees.... I carried a water 4 bottle belt and I ended up running with four blocks of ice around my waist (Gatorade froze after the first 3 miles)... There was ice in my eyebrows...
And OUCH! a very important part of my body froze.. The thawing hurts more than the actual freezing process...
Here is the route.
Carta agradecimiento para los donadores en vic4andy.com
Muchas gracias por tu donativo al Children’s Hospital Boston.
En las más de 675 noches que pasamos con Andy en el hospital nos encontramos que los médicos, investigadores, enfermeras, administradores y hasta las personas de limpieza en el Children’s Hospital Boston tienen algo en comun:
A todos les importa.
Y es por eso que el tratamiento para Andy ha sido exitoso.
Andy cumple 8 años en Mayo, está en la escuela, leyendo sus primeros libros, escribiendo y pintando muchos cuentos y disfrutando a sus nuevos amigos que no viven en el cuarto de alado...
Sofía está a punto de cumplir tres años y se ve claramente que salvar la vida de su hermano fué sólamente el principio…. Ya hace un poco más de dos años desde que Sofía donó células madre de su cordón umbilical y de su médula ósea para el transplante de Andy…
Paulina está estudiando enfermería porque ya le gustó…
Y esperamos que el libro que escribimos con más de 187,571 palabras describiendo por lo que pasamos los últimos 7 años se publique pronto.
¡Agradecemos de todo corazón que a ti también te importe!
Dicen por ahí que menos del 1% de la población del mundo ha terminado un maratón. El 16 de Abril, Victor y yo vamos a intentar terminar el maratón de Boston para que les siga importando en el hospital y sigan salvando vidas como lo hicieron con Andy. Nos inscribimos en el equipo en Octubre del año pasado y hemos estado entrenando desde entonces. ¡Ninguno de los dos habíamos corrido tanto en nuestras vidas! Esperamos poder terminar los 42 kilómetros y el objetivo del equipo es reunir 1 millón de dólares.
¿Que opinan Andy y Sofía al respecto?
Se atacan de la risa porque Victor y yo no vamos a poder caminar por unos días por el dolor de piernas…. Ya están listos para las porras.
Te mantendremos informado en nuestras paginas web que son:
www.vic4andy.com y www.42km.org
Muchas Gracias!
Andrés L. Treviño
I ran 5 x heartbreak hill
The most famous hill in all of running is almost certainly “Heartbreak Hill”, between miles 20 and 21 of the Boston Marathon course.
Why is it called heartbreak hill?
In 1936, while running the last of the four Newton hills, defending champion Johnny Kelley finally caught the leader, Ellison “Tarzan” Brown. As he passed him, Kelley gave him a gentle pat on the shoulder, figuring that Brown would quickly fade. Instead, Brown, motivated by this bold move, immediately regained the lead and went on to win.
The late Boston Globe sportswriter Jerry Nason coined the term “Heartbreak Hill” in the next day’s issue when he described Kelley’s bitter defeat ("breaking Kelley's heart").
Every Patriots Day since 1936, Heartbreak Hill on Commonwealth Avenue in Newton has become a focal point for many of Boston's most vocal and knowledgeable marathon spectators ---- particularly those eager to witness the drama (and agony) as runners strive to conquer the most challenging section of this historic course.
Here is what some people in Japan think about PGD.
Boost use of genetic diagnosis
By RINA SHIBOI
Tokyo
Preimplantation genetic diagnosis (PGD) is a medical technology that checks whether the chromosomes and genes of fertilized eggs are defective. Today, even though there isn't a particular law that prohibits PGD in Japan, it is strictly controlled by The Japan Society of Obstetrics and Gynecology, a very influential organization. Its position is that PGD involves an important moral issue in that choosing a "good" fertilized egg allows one to "select" lives. I disagree. I believe that PGD should be encouraged more in Japan for four reasons:
* The moral issue is not as crucial as they say. PGD is practiced before an egg is implanted in the womb. Even the Japanese government does not consider fertilized eggs to be human beings before implantation.
* The purpose of PGD is not to select a better life or baby but to help women who suffer from sterility or habitual miscarriage. It is said that 66 percent of miscarried children have chromosomal troubles. So if PGD can identify the problem, there is a great probability of preventing miscarriage.
* PGD brings us greater freedom to give birth. Even though the birthrate of Japan is falling, a lot of people still want to have children. PGD enables these people to realize their wish.
* PGD is safe and has been practiced in many countries since 1990.
I ran 12 miles (19.38 km.) today.
This has been my longest run so far.
I've completed 20 runs for a total of 110.08 miles (177.16 km) since I started training with this shoes Nov. 26.
I bet this is more than the total distance that my feet transported me since May 1999 (when Andy was born...) due to hospitalizations.
My pace today was 9'46" per mile. If I keep this pace I will finish the Boston marathon in 4 hours 26 min. I have 86 days to lower the pace. I want to finish in less than 4 hours.
Here is today's route.
Donations are welcome at www.vic4andy.com, www.42km.org and www.mark4andy.com!
Andy and Mark at the Childen's Hospital marathon team kick-off December 14th, 2006.
Visit this page here.
I ran 5 miles today.
Visit www.vic4andy.com, www.mark4andy.com and www.42km.org and donate.
Heartbreak hill 5 times. I ran 5 miles today.
Pace 9'45''/mi
Visit www.42km.org and donate!
MIT Technology Review interviewed a bioethicist at the Univ. of Pennsylvania who studies the ethical issues surrounding PGD.
Shaping Babies
The number of genetic tests that can be performed during in vitro fertilization is skyrocketing. What does this mean for human reproduction?
...doctors, clinicians, and their ethical-review boards are called on to make complex ethical decisions, such as if parents can choose the sex of their baby for nonmedical reasons or be allowed to screen embryos for diseases that they may never develop or that may only strike late in life.
I was paying attention to the bioethicist until I read "the God gene"... she said,
For example, lately we've seen a lot of literature about the God gene, the notion [that] there is genetic basis to faith or spirituality. If we ever get to the point where we can influence such complex traits, public outcry will be such that we might be able to regulate against certain uses.
Read the article here.
Up heartbreak hill 4 times = I ran 3 miles today..
I ran 6 miles today.
The ankle is doing ok..
While running I remembered the day we met Dr. Orange.. It was around September 22nd., 2000...
A tall man with short hair, a purple shirt and a multicolor tie entered the room. He was probably three or four years older than me, he had a stethoscope around his neck and he was carrying what looked like a medical record. He looked distinguished and had an air of confidence, the posture and calm of someone accustomed to medical research.
“Good morning, my name is Jordan Orange, I’m an Immunology fellow”
Up Heartbreak Hill four times.
Today I trained at "Heartbreak Hill" going up & down four times.
A total of 4.12 miles.
It is the 2,007th year of the Anno Domini (AD) era, the 7th year in the 21st century, and the 7th year in the 3rd millennium.
Some of my non work related resolutions:
Find a cure for Non Hodgkin's Lymphoma. My mother has been recently diagnosed with Indolent Mantel Cell Non-Hodgkin’s Lymphoma.
Run the Boston Marathon for Six West (42km.org)
Publish a book (Manuscript currently 43 chapters, 219, 316 words)
Help more children with NEMO (Conner, Cooper, Jack, Jackson, Jacob, Keith, Rhys, Simon)
Work related resolutions:
Publish the new ekofon.com.
One hundred thousand users.
