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More Blood Samples Needed!

NP-C Study Up Date! 40 MORE Control Blood Samples Needed

Hello Everyone,

We received the following from one of the researchers and thought all of you needed to know what your support is REALLY doing!

“We really do need samples, and we need them urgently. The identification of the oxysterols and the lysotracker assay are just the beginning of very exciting work the SOAR-NPC Collaborative is doing in the biomarker area. As we have discussed, there is a clear need for additional biomarkers that will assist in diagnosis and serve as markers for disease progression. What you can convey to the families that have helped us thus far is that: (1) the control samples already provided have directly led to the identification of the oxysterols and lysotracker assay, which are now being validated in multi-center studies in Europe and at the NIH, and (2) the control samples are essential for the new phase of discovery work so we can have markers that can be paired with specific therapies in efficacy trials. In other words, the samples they provide will lead to approval of new therapies for NPC.

To perform these studies, we have ample number of NPC subject samples from Denny. What is needed now are more control samples. Outside of directly providing funds, which SOAR-NPC generously does, I can think of no better way in which the parents can accelerate our work than by assisting us in procuring control samples.

I hope you can convey the urgency and importance of this work to the families contributing to this effort. We need their help.”

Phlebotomy Services International is currently working on setting up four event to collect 40 more sample for the research team. Here are some early details of events we are looking to set up and the control blood samples that we need for each area.

Reno, NV (goal date Aug. 2010)
5 - 6 years and under
1 - 6-12 years
2 - 13-18 years
2 - 20-26 years

So. Oregon (goal date Sept. 2010)
2 - 6 years and under
2 - 6-12 years
2 - 13-18 years
2 - 20-26 years
1 30 yrs
1 50 yrs

Central California (goal date Sept. 2010)
5 - 6 years and under
1 - 6-12 years
2 - 13-18 years
2 - 20-26 years

Location not yet determined (Goal date Oct. 2010)
5 - 6 years and under
1 - 6-12 years
3 - 13-18 years
1 30 yrs


The age groups are much wider this time so I thought I would let you all know about it. There were many of you willing to volunteer last time that were not in the right age group that may be able to participate this time. This may be the last draw we try to coordinate in the So. Oregon area. We will also try to collect samples in CA possibly near Gilroy, so if you know anyone who may be willing please let them know an opportunity will be coming up soon. I will be sending out information on sign-ups and all the when and where after we set an exact date.

Thank you,
Kristin




 


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