Ara Parseghian Medical Research Foundation

06/10/2016

Check out the new Ara Parseghian Medical Research Fund's new page: https://www.facebook.com/parseghianfund/

The Ara Parseghian Medical Research Fund is dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease

04/18/2016

Below is a link for the day in the life video for the VTESSE clinical trial VTS-270 (cyclodextrin) for Niemann-Pick Disease, Type C Disease. "One thing that I kept getting asked over and over again by families was, “what is it like to be in the trial?” So, in response to that, we put together this video to help explain “a day in the life.”" -Carrie Burke VTESSE
https://vimeo.com/160183927

02/18/2016

The Smith Family Breakthru Fund is in the Infinity Coaches Charity Challenge again this year. The 3rd round begins on Monday Feb. 15th and we need everyone to vote to get Coach Painter to the final four round. Round 3 is Feb. 15th- Feb. 28th. Round 4 is Feb. 29th -March 13th. We need everyone to vote once a day until March 13th!! votemattpainter.com

07/10/2015

Register to attend Vtesse’s town hall webinar, July 14th, on their investigation of VTS-270 (cyclodextrin) for Niemann-Pick Disease, Type C (NPC)? This is a great opportunity to get answers to your questions and learn about the latest developments surrounding the clinical trial.
Register for July 14 at 1:30 ET https://attendee.gotowebinar.com/register/7192330336175692801
Register for July 14 at 7:30 ET https://attendee.gotowebinar.com/register/7756655778643496705

Webinar organizers are prohibited from soliciting confidential personal information (credit card information, social security numbers, etc.) in the registration form. This questionnaire is not intended to handle sensitive data.

06/02/2015

All of us here at the Ara Parseghian Medical Research Foundation wish to extend our deepest sympathies to the Smith family of West Lafayette, Indiana. Keaton Smith passed away on May 22, 2015 at the age of 14 after his courageous battle with NP-C disease. Keaton was an 8th grade student at Battle Ground Middle School and was member of the St. Thomas Aquinas Center. Keaton loved baseball – he played on the Tippy Stars Baseball team and cheering on the Purdue basketball teams whenever possible.
Keaton’s parents, Trent & Julie created the Smith Family BReaK Thru Fund in honor of their 3 children with NP-C disease and have dedicated their lives to raising funds and awareness for NP-C disease.
Keaton is preceded in death by his sister, Riley and his brother, Braden.
We ask that you all keep Trent & Julie Smith and his older sister, Chandlar, in your thoughts and prayers.

05/18/2015

Mark your calendars for The National Niemann-Pick Disease Foundation Annual conference ~ August 6th ~ 9th, 2015 in Chicago, Illinois. For more information visit: http://nnpdf.org/familyservices_03.html

The National Niemann-Pick Disease Foundation is pleased to invite you to the 23rd Annual NNPDF Family Support and Medical Conference in Chicago, Illinois~Town of Rosemont, August 6 – August 9, 2015, at Loews Chicago O’Hare Hotel. Please mark your calendar and make plans now to join us for this infor…

04/23/2015

Don't miss out on your chance to win a 2015 Ford Mustang 50th Anniversary Edition. All proceeds purchased through the Ara Parseghian Foundation will help to fund Niemann-Pick Type C research. Tickets are limited so get yours now at:

https://parseghian.ejoinme.org/MyPages/2015FordMustangRaffle/tabid/673351/Default.aspx

04/09/2015

Register to attend Vtesse’s first town hall webinar on their investigation of VTS-270 (cyclodextrin) for Niemann-Pick Disease, Type C (NPC), April 16, 2015.

The webinar geared toward US audiences is scheduled for 6:30 PM CT.
Register here: http://bit.ly/NPCWebinar
The webinar geared toward EU audiences is scheduled for 6:30 PM BST.
Register here: http://bit.ly/NPC_Webinar

This is a great opportunity to get answers to your questions and hear about the advantages of conducting a clinical trial and options for accelerated approval.

Visit the Cyclodextrin page for the full press release and international webinar times: http://www.nnpdf.org/Cyclodextrin.html