Mission accomplished: Jayme Green completes 357-mile Ride for Granton

June 21, 2008

06/21/2008
Mission accomplished: Jayme Green completes 357-mile Ride for Granton
By: Charlotte Marsch, BHFP editor charlottem@cpimo.com

Jayme Green arrived at Wellspring Baptist Church at about 7:30 p.m. Friday, June 20, to complete his Ride for Granton to raise money for his 8-month-old cousin, Granton Bayless and his family.
In five days, Jayme Green logged 357 miles on his bike, leaving Topeka, Kan., Monday, June 16, and arriving in Bolivar at about 7:30 p.m. Friday, June 20. It wasn’t just a joy ride. He had a mission: Raising money for his cousin Jenni Bayless and her husband, Daniel and 8-month-old son, Granton.

Green was greeted by family members and friends of the Baylesses at Wellspring Baptist Fellowship at the end of his ride Friday evening. About 10 children brought their bicycles and rode a victory lap with Green, Jenni’s cousin, after he arrived.

As of Friday evening, the fundraising total was at more than $8,000 with more donations still expected. On Friday, Green’s story went out on nationally syndicated Christian radio, so he expects that to bring in more money, too.

Granton has been hospitalized at Children’s Mercy Hospital in Kansas City since late March when he was diagnosed with severe combined immunodeficiency syndrome, commonly referred to as “bubble boy disease.” Granton was born without an immune system but has survived several infections and viruses. He received a transplant of umbilical cord blood stem cells Tuesday, June 10.

“He’s holding his own right now,” Daniel said Friday evening. “He’s on Day 10. They say the first 30 days are the most critical.”

Daniel and Jenni are posting daily updates at grantonbayless.blogspot.com.

Daniel took sick leave for the remainder of last school year, but the Bolivar High School teacher and track coach has returned to Bolivar the past three weeks to teach summer school. Jenni’s visit Friday evening was her first trip home since Granton went to Kansas City, where he likely will stay for at least another three months.

Daniel said the community has supported them well during the last three months.
“It’s just amazing,” Daniel said, “just the way people have really come out to help out Granton. But I’ve learned in Bolivar we take care of our own, and people have been so amazing for us.”

Granton has been featured on three TV stations and in the Kansas City Star, an article that focused on how the people of Bolivar have rallied around the Baylesses.

The ride

The bike Green rode was donated by Sunshine Bike Shop in Springfield. Green sent an e-mail to the store telling what he was planning to do and why he needed a bike donated.
“We were just touched by the story and offered to donate the bike,” said Kay Meeker, who owns the store, along with her twin granddaughters Jenna and Jerra Umlauf. They attended the party Friday night.

The bicycle was then given away Friday night, with the drawing for the bike raising $1,200. Signs to Go in Topeka, Kan., donated lettering on the bicycle that reads, “Ride for Granton June 16-20, 2008,” “Romans 12:12” and “Isaiah 40:31.”

Toby, the Support and Gear Man, drove alongside Green throughout the ride.

“It was great,” Jayme said just minutes after completing the ride. “You could really tell that God was behind it.”

Along the way, Green raised awareness for Granton’s story, as well as raising money for the Bayless family.

“I met a lot of great people along the way,” he said. “Every town I stopped in was wonderful.”

Read his blog at rideforgranton.blogspot.com and you’ll find out what he’s talking about:

* The first night, they were hosted by First Christian Church of Burlington, Kan., where he was greeted by the local newspaper and the chamber of commerce, served dinner by the Young Adults Sunday school class and served a large breakfast the next morning.

* The second evening they arrived at Daniel’s alma mater, Caney Valley High School, where he was greeted by a reporter from the local newspaper. They then went to the Bayless farm, where Daniel’s parents met them with a “massive feast.”

* When they arrived in Stockton at 1 p.m. Thursday, they were greeted by students from Stockton Elementary School, where Jenni taught art until Granton was born. Pat Steinmuller, Jenni’s former boss and the principal at Stockton Elementary, treated them to lunch, and then they pitched a tent for the night.

They spent most of the day Friday at Stockton, speaking to summer school students at Stockton Elementary School.

“They were awesome,” Green said. “The whole lawn of the school was filled with kids, and a lot of the teachers and students had already donated.”

linkback url: http://www.ozarksnewsstand.com/site/tab1.cfm?newsid=
19792789&BRD=2841&PAG=461&dept_id=603510&rfi=6


Everybody Wins

June 16, 2008

Everybody Wins
Marc Ringel


GREELEY, CO (2008-06-16)
The medical community is full costly and often times unnecessary diagnostic tests that may not yield conclusive results. But KUNC Commentator Dr. Marc Ringel says some tests are worth taking.

One of the premier principles of screening for a disease is that there has to be a treatment for the illness or else it’s not worth testing for. There are, for example, tests (not very well validated yet) that can suggest if a person is susceptible to developing Alzheimer’s Disease. Given that there is no known treatment for this horrible malady, nor any reliable way to stave off its appearance, what good could it do to know you’re likely get it? I can only see a downside, based on the panic that expectation of Alzheimer’s might inflict with every forgotten face or misplaced word. Another basic principle of health screening is that the disease being looked for needs to be prevalent enough that sufficient cases will be turned up. Otherwise, you might spend hundreds of thousands with little prospect of uncovering even one person to help. So, how come the State of Wisconsin has just invested half a million dollars for medical laboratory equipment and will spend another $400 thousand a year on supplies to add to its newborn blood screening panel a test for an illness that afflicts one in 65,000 newborns? In 2005 there were just 68,532 live births reported in that state. In other words, not even counting startup costs, Wisconsin would spend nearly half a million dollars to find just one case. The screening does makes sense when you consider the disease they’re looking for. It’s called Severe Combined Immunodeficiency Disorder (SCID), an affliction that cripples the immune system, leading, from early in life, to an existence fraught with suffering brought on by overwhelming repeated infections. Medical expenses for a person with SCID are estimated at $2 million, from cradle to premature grave. Testing for this affliction does meet the first principle of screening, that there be an effective therapy for the disease uncovered. In fact, SCID meets that criterion so well as to make it worth looking for, no matter how rare. Bone marrow transplantation is successful in curing 96% of infants of this immune disorder if accomplished before the age of 3-1/2 months. Since they already have a program that tests all newborns for other congenital diseases, any of which can cause untold misery if not diagnosed early, it’s easy enough for Wisconsin to add one more test to the panel. Thanks to amazing recent advances in biotechnology, the cost of an ultra-sensitive test for SCID is under $10 per individual. Admittedly, this program will not affect a lot of kids, about one per year in the whole state of Wisconsin. But everything about it is still right. That one baby is likely to live a long healthy life, instead of a brief miserable one. Imagine the benefits to this kid’s family too, having a well child instead of a chronically ill one in the house. And society is saved a whole lot of money. I can’t think of a better deal for the public at large, not to mention for the child and his family. It’s a great deal for us doctors too, at least psychologically, because, even in the dense thicket of disease screening and health economics, for once we have a clear-cut right answer.

linkback url: http://www.publicbroadcasting.net/kunc/news.newsmain?action=article&ARTICLE_ID
=1298966&sectionID=1


Neonatal bone marrow transplantation of ADA-deficient SCID mice results in immunologic reconstitution despite low levels of engraftment and an absence of selective donor T lymphoid expansion

June 15, 2008

Neonatal bone marrow transplantation of ADA-deficient SCID mice results in immunologic reconstitution despite low levels of engraftment and an absence of selective donor T lymphoid expansion

Denise A. Carbonaro1,2, Xiangyang Jin1, Daniel Cotoi1, Tiejuan Mi3, Xiao-Jin Yu1, Dianne C. Skelton1, Frederick Dorey2, Rodney E. Kellems3, Michael R. Blackburn3, and Donald B. Kohn1,2

1 Division of Research Immunology/Bone Marrow Transplantation, Childrens Hospital, Los Angeles, CA; 2 Department of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles; and 3 Department of Biochemistry and Molecular Biology, University of Texas-Houston Medical School

Adenosine deaminase (ADA)–deficient severe combined immune deficiency (SCID) may be treated by allogeneic hematopoietic stem cell transplantation without prior cytoreductive conditioning, although the mechanism of immune reconstitution is unclear. We studied this process in a murine gene knockout model of ADA-deficient SCID. Newborn ADA-deficient pups received transplants of intravenous infusion of normal congenic bone marrow, without prior cytoreductive conditioning, which resulted in long-term survival, multisystem correction, and nearly normal lymphocyte numbers and mitogenic proliferative responses. Only 1% to 3% of lymphocytes and myeloid cells were of donor origin without a selective expansion of donor-derived lymphocytes; immune reconstitution was by endogenous, host-derived ADA-deficient lymphocytes. Preconditioning of neonates with 100 to 400 cGy of total body irradiation before normal donor marrow transplant increased the levels of engrafted donor cells in a radiation dose–dependent manner, but the chimerism levels were similar for lymphoid and myeloid cells. The absence of selective reconstitution by donor T lymphocytes in the ADA-deficient mice indicates that restoration of immune function occurred by rescue of endogenous ADA-deficient lymphocytes through cross-correction from the engrafted ADA-replete donor cells. Thus, ADA-deficient SCID is unique in its responses to nonmyeloablative bone marrow transplantation, which has implications for clinical bone marrow transplantation or gene therapy.

linkback url: http://bloodjournal.hematologylibrary.org/cgi/content/short/111/12/5745?rss=1


Baby with rare condition with get a cord-blood transplant

June 9, 2008

Baby with rare condition with get a cord-blood transplant

The Bolivar, Mo., baby who inspired more than 1,700 people in three Midwest towns to register as potential bone marrow donors is scheduled for a cord-blood transplant today.

Eight-month-old Granton Bayless is in Children’s Mercy Hospital with a rare condition called severe combined immunodefiency. A cord-blood transplant is his best option, said his aunt, Denise Bayless.

It is too early to know whether last month’s donor drives have produced a bone marrow transplant match. For more information, go to http://granton bayless.blogspot.com.

| Debra Skodack, dskodack@kcstar.com

linkback url: http://www.kansascity.com/115/story/656774.html


Last Call

June 4, 2008

Last Call !!! June 4, 2008

This is your last chance to register for the conference if you haven’t already.  I still have a few rooms left and will keep registration open until they are gone….so REGISTER NOW!

The online registration has been taken down so you will need to print the pdf form and fax it back to the IDF at 410-321-9165.  For the form, click here:  http://www.primaryimmune.org/pubs/SCID_Conf_2008_registration.pdf

If you have not received email confirmation from me, Heather Smith, saying that I have received your registration, please let me know ASAP.  Email me at Heather@scidangelsforlife.com so I can make sure your registration was received successfully.

See you at Wintergreen Resort in July!!!

linkback url:  http://scidconference2008.wordpress.com


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