Family’s blood clinic inspires public to give

Family’s blood clinic inspires public to give
By DAVE DORMER, SUN MEDIA

In memory of his son, Evan, Frank Pogubila is asking Calgarians to give a gift that is literally straight from the heart.

Two years after Evan died at age 13 months following complications from a bone marrow transplant, Pogubila, wife Melanie and their daughter Jordan held the third annual donation clinic yesterday in Evan’s honour — the first held just before his transplant surgery — reminding Calgarians about the need to donate blood.

“It makes me feel good that we’re able to rally people to give back, because no matter how much money I have, no matter how much of anything I have, I cannot buy blood and blood products to give back,” Frank said at the Calgary Blood Donor Clinic yesterday.

“Basically it’s in you to give and the support we’ve seen has been awesome.”

Born with severe combined immunodeficiency, or SCID, Evan spent most of his short life in isolation in hospital — as he could not have skin-to-skin contact — where he regularly received blood transfusions to help his weakened immune system.

Performed in Toronto, the transplant was a success but Evan developed complications and died two months later.

“What really means a lot to myself and my family is when we hear people saying that because of a clinic like this, they joined the bone marrow registry and they have gotten calls and they have gone down the path of seeing whether or not they were a match,” said Frank.

“The more people we have in the system, the better chance someone like Evan or another little person who unfortunately needs it will have the opportunity of life.”

Each week, at least 1,500 units of blood need to be donated in southern Alberta, said Judy Jones, director of donor services at the clinic.

And each donation could save up to three lives, said Jones.

“One donation is one unit,” she said.

“Once they’re done, they go up to the lab and they are separated into three components, red blood cells, plasma and platelets.”

Another clinic is being held April 25 in Evan’s honour at the Calgary Blood Donor Clinic, 737 13 Ave. S.W.

For more information, call 1-888-236-6283 or visit http://www.blood.ca.

DAVE.DORMER@SUNMEDIA.CA

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David’s Dream Run Moves to Bubble Boy’s Hometown

David’s Dream Run Moves to Bubble Boy’s Hometown

SHENANDOAH, Texas — David Vetter was twelve years old when he died in 1983 of severe combined immune deficiency (SCID). This young boy from Shenandoah, Texas was known to the world as “the Bubble Boy” and lived his entire life inside a totally germ-free environment. In honor of his memory, the annual David’s Dream Run and Walk was established to help raise money for the David Center at Texas Children’s Hospital’s Allergy and Immunology Clinic, which provides diagnosis and treatment to children with allergy, asthma and primary and secondary immune dysfunction, including HIV/AIDS. The event will be held on Saturday, May 9, 2009.

This year for the first time, the event will be held in David’s hometown. It will start in the parking lot of the new Woodforest Bank Stadium and adjacent natatorium located in Shenandoah behind the Portofino Shopping Center and proceed along David Memorial Drive before returning to the finish line at the stadium. The facilities were opened last year as part of the Conroe Independent School District athletic facilities.

David’s sister, Katherine Vetter Canion expressed the town’s appreciation when she learned the event specifically designed for children and families would be held in Shenandoah. “It’s a home coming we’re so very proud of,” she stated. “The people who knew my brother best and who for years protected his privacy and last name can now be a part of his incredible legacy. It’s very humbling for my mother, father and me and our families, and we are so grateful for the work of all the folks at Texas Children’s Hospital. They will always be very special to us,” she said.

Since 1994, David’s Dream Run has raised over $260,000 for Texas Children’s Hospital. Last year, more than 700 participants and dozens of volunteers took part in the David Dream Run which will consist of both a one mile walk and a 5K run. It is specifically designed for the participation of families, as well as seasoned runners.

This year’s organizing committee consists of Linda Woods, Director of Shenandoah Convention & Visitors Bureau; Lee Allen, Principal of the David Elementary School in The Woodlands; Michelle Barrell and Melissa Wolsky, race volunteers for many years; Brian Carlisle of Shenandoah Police Department; and Katherine Vetter Canion, David’s sister.

All contributions are tax deductible and 100 percent of the funds raised will be donated to the David Center. For more information on how to participate in the David Dream Run and Walk, telephone 281 381-7229 or visit the Web site at the link below.
Related Links:
David’s Dream Run Web site

Analysis: Gene therapy has immense potential

After almost two decades, gene therapies have recently started to deliver on their immense promise

Mark Henderson, Science Editor

Gene therapies have been a part of medicine for almost two decades. Only recently have they started to deliver on their immense promise after a string of setbacks raised doubts about the safety of manipulating human DNA, centre, to treat disease.

The idea behind gene therapy is that by inserting new copies of a particular gene into human cells, it should be possible to correct defects, or to enhance beneficial biological processes. This can be done with viruses, which introduce their own genetic material into the cells they infect, and can be engineered to carry a human gene.

This technique was first performed successfully in 1990, when an American team used it to treat Ashanti de Silva, a four-year-old girl with severe combined immune deficiency (SCID). This genetic disease leaves children without a functioning immune system — it is known as “bubble baby” syndrome because sufferers must often be shielded from germs in a sterile pouch. The technology, however, has since encountered several problems. In 1999 Jesse Gelsinger, an 18-year-old with an inherited liver disease who had volunteered for a gene therapy trial, died after suffering a massive immune reaction to the viral vector. Further safety fears were then raised when five children in an Anglo-French trial of a SCID gene therapy developed leukaemia because the viral vector interfered with a gene that can trigger cancer.

Gene therapy has also failed, so far, in the treatment of diseases such as cystic fibrosis: these affect so many of the body’s tissues that it is difficult to infect all the cells that need to be corrected. And there are ethical concerns about using gene therapy to modify cells permanently, especially if these changes can be passed on to subsequent generations..

New viral vectors, however, have lowered the risk of immune reactions and inadvertent activation of cancer genes. Many of these also work only for a short period of time, so any damaging effects should be reversible.

Several trials have also started to produce extremely encouraging results. The Anglo-French SCID therapy, which now uses a new vector, seems to be capable of curing the disease indefinitely. Another UCL team, led by Robin Ali, has improved the sight of patients with Leber’s congenital amaurosis, a genetic cause of blindness. Cerepro, an Ark Therapeutics drug that uses the same vector as the foetal growth promoter, has had good results against brain cancer.

What links these success stories is that they involve diseases that affect a particular type of tissue, such as white blood cells or retinal cells, which are relatively simple to target for infection with a modified virus. Severe foetal growth restriction falls into the same category: it should only be necessary to influence the uterine arteries to get a result.

The dream of using gene therapy to treat more systemic diseases such as cystic fibrosis, muscular dystrophy or spinal muscular atrophy, however, remains more distant. The challenge of conveying the replacement gene to cells throughout the body is one that still has to be overcome.

• Mark Henderson’s 50 Genetics Ideas You Really Need to Know. Quercus £9.99. To buy it for £9.49 inc p&p call 0845 2712134 or visit timesonline.co.uk/booksfirst

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