[BARC-List] [OT] Friend seeks urgent medical help

[Scott Ehrlich]

Although not radio-related, any help/leads anyone can offer would be
most appreciated -

Relayed from a friend at work:

My 6 year old son's best friend's 4 year old little sister has very
recently been diagnosed with an inoperable brain tumor with a poor
prognosis.

Suffice it to say the family is both devastated and desperate (as I
know I would be) and are trying to find out any information they can
about getting involved with any clinical trials that she might be a
good candidate for.

Her mother has reached out via our town parents network to see if
anyone might personally know or have any details on the following
doctors and their

trials:


Dr. Ira Dunkel who is conducting a phase 1 clinical trial called PBTC
33 at Memorial Sloan Kettering Cancer Center in NY


A study Called Saha (or Vorinostat) done at Dana farber by a Dr. Manley


Does anyone know anything about a Dr. Roger Packer at children's Washington DC


If anyone should happen to have any info. that I could pass along to
the family it would be greatly appreciated.

Just as a follow-up I'm told the specific type of tumor she has is
DIPG (Diffuse Intrinsic Pontine Glioma):

http://www.reflectionsofgrace.org/index.php/diffuse-intrinsic-pontine-glioma-dipg.html


Thanks,
Chris