Wednesday, September 28, 2011

Update on Bone Marrow Testing Drive for Isaac del Valle

Again, from Holy Redeemer's email list:

Dear Friends and Family of Isaac:
This note is to try to answer as many questions as possible concerning the bone marrow testing event that will be held on Friday, September 30th at Marist High School (located at 3790 Ashford Dunwoody Rd, NE, Atlanta, GA 30319). The purpose of this event is to specifically look for a bone marrow match for Isaac del Valle, a 10th grade student at Marist. Details are as follows:
The bone marrow drive will take place from 12:00-8:00 at Marist and people can come any time during these hours. No appointment is necessary. Testing involves a simple cheek swab and should take about 20 minutes.
Testing will be performed on individuals ages 18 and older. Children’s Healthcare of Atlanta (and many other children’s hospitals) has policies which prohibit bone marrow transplants from unrelated donors under the age of 18. Because of this policy, the del Valles have decided to limit testing to those ages 18 and older.
We cannot know who might be a match for Isaac. His doctors believe the most likely match will be someone between the ages of 18-60 of a mix of Hispanic and Caucasian background. However, anyone can be a match and are welcome to be tested. We do have a limited number of free tests for those who cannot afford the $115 cost. We do not want to turn away ANYONE willing to be tested and, therefore, are seeking donations to cover the cost of more test kits. If you would like to help us purchase test kits which will be made available to willing participants, you can donate online to www.curechildhoodcancer.org. Click on “donate” and put “Isaac” in the comments section. A special fund has been set up for Isaac at CURE Childhood Cancer for the express purpose of accepting donations to purchase test kits.
We will be selling t-shirts on Friday for $10.00 each in support of Isaac. All proceeds will go towards the test costs.
11Alive has been covering Isaac’s story and will be on site at Marist on Friday during the test drive to continue the coverage of this urgent bone marrow drive. We want to thank everyone for their assistance in helping to find a match for Isaac and in particular to Marist for their support and allowing the bone marrow drive to be held at the school. Thank you to everyone who has already donated money for this bone marrow drive and in advance to those who are considering a donation.
We are urgently looking for volunteers to cover one or two hour shifts from 12-8 pm on Friday. We need at least 15 volunteers per shift. If you can volunteer, please send the time slot you are available to Lynne Bauman at LBauman@syntapharma.com.
The following are some FAQ’s regarding bone marrow testing and bone marrow transplants. If you still have questions, please email them to Lynne Bauman at LBauman@syntapharma.com or Kristin Connor atkristin@curechildhoodcancer.org. Please do not call Kashi Labs. They have been overwhelmed with calls and do not have the resources to handle a large volume of calls.
1. What if I'm already on the registry? Should I be tested again Friday?
No. If you are on the registry, we already know you are not a match for Isaac and there is no need to be re-tested.
2. What if I can't come Friday or am already on the registry? How can I help Isaac?

Because of the cost involved in expedited testing ($115 per person), we are trying to raise money to cover the cost of the kits so cost does not prevent anyone willing from being tested. The more people tested, particularly those fitting the profile of 18-60, Caucasian/Hispanic mix, the greater the chance a match will be found. You can contribute to this effort by visiting www.curechildhoodcancer.org and clicking on "donate". Enter "Isaac" in the comments section.
3. If I contribute to Isaac's fund through CURE, how will the money be used?
100% of all donations to Isaac's fund will be used to cover the cost of bone marrow testing. In the event funds donated are not exhausted by the bone marrow testing, excess funds will be used to cover cancer related costs incurred by the family, or, if the family chooses, they will be donated to CURE to further our mission of curing childhood cancer through research.
4. Are there medical conditions which might make someone ineligible to be a donor?

Yes. There are many factors that may make a person medically ineligible to donate. For guidance, please visit http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx.
5. How is a bone marrow match determined?
Doctors look for a donor who matches their patient's tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLAs are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match between the patient's HLA markers and yours, the better for the patient.
Source: http://www.marrow.org/
6. What happens if I am identified as a potential match?
More testing will be done to see if you are the best possible match for the patient. Additionally, an information session will be scheduled so you can learn more about the donation process, risks and side effects.
7. If I am tested Friday, will I be added to the National Bone Marrow Registry

No. This testing is being done by a private lab specifically for Isaac. If you wish to join the National Bone Marrow Registry, you will need to contact the Be the Match Foundation, http://www.marrow.org/.

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