A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, May 1, 2013

May Day

It's May Day - May 1.

In some countries it is a holiday, but not here in the US.

Yet, we did have a bit of a celebration today - the temperature reached well over 70 degrees today and it was an absolutely beautiful spring/summer day.  Beautiful blue sky, bright sunshine, and just a light breeze.  It was a wonderful day to be outside.

Unfortunately, it was a workday, so I didn't get a chance to get outside and enjoy the weather.


On another subject, there is a conference call this Friday, May 3 on the NIH cyclodextrin trial.  I have copied the information from the NNPDF website.

Cyclodextrin Update

NPC Community Wide Conference Call
Friday, May 3rd, 2013 ~ 8:30am PDT; 10:30 am CDT; 11:30 am EDT* 


Hello NPC Families and Friends,                                                                                 April 30th, 2013

The National Niemann-Pick Disease Foundation has been informed by Dr. Denny Porter, principal investigator of the NIH/TRND Cyclodextrin Clinical trial that the NIH team has decided to pause the Cyclodextrin clinical trial ~ currently being held at the NIH in Bethesda, Maryland, USA.  The NNPDF will host a NPC community-wide conference call, with Dr. Denny Porter and Dr. Dan Ory as the key speakers, to discuss this and other updates pertaining to the trial.

The NPC community-wide conference call will be held on ~ Friday, May 3rd, 2013 at:
*8:30 am PDT; 10:30 am CDT; 11:30 am EDT; 12:30 pm in Argentina and Brazil; 6:30 pm Israel
4:30 pm in UK; 5:30 pm in France, Germany, Holland, Italy, Poland, Spain, Switzerland. 

The following items will be addressed during the call:
  • Overview of the issues leading up to the decision to place the current trial into a pause status
  • The plan to continue the NIH Phase 1 clinical trial to evaluate the safety of Cyclodextrin in NPC1  
  • The NIH/TRND Cyclodextrin Clinical Trial team will continue to send additional follow-up correspondence to the NPC community world-wide regarding the protocol and status of same
  • Questions pertaining to the information presented during the call may be e-mailed directly to members of the NIH/TRND team and they will forward along to Drs. Ory and Porter for a response.  nichdnpc1@mail.nih.gov
  • This teleconference will be limited in time and recorded. A written transcript of the call will be posted and made available to the NPC community.
  • Questions during the call on Friday or resulting from the call can be emailed to: nichdnpc1@mail.nih.gov and will be responded to either on the call, if there is time, or after the call by direct e-mail. In addition, we will create a “Q & A” document resulting from these inquiries which will also be posted and made available to the NPC community.
Listed below are the dial-in conference call instructions:
Toll free/Canada and the United States:        1-800-615-2820
Toll (International Participants):                          1-719-867-0495*
Participant Passcode:                                      187670#
*Additional International Toll Free lines are being established and will be posted here prior to Friday’s call.
If you have any questions pertaining to this notification ~ please feel free to e-mail the NNPDF Central Offices at:  nnpdf@nnpdf.org.


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