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"We've met too many other families and too many other beautiful children, who have Niemann-Pick Type C who really need to be saved." - Mike Parseghian

Vtesse Town Hall Webinar

If you are a parent or caregiver of a person with NPC or a physician who sees NPC patients, please join us for Vtesse, Inc.’s 6th July 2016 Town Hall Webinar.  Representatives from Vtesse, along with clinical investigator Suresh Vijay, MD, of Birmingham Childrens Hospital, and principal investigator Paul Gissen, PhD, MRCPCH, of Great Ormond Street Hospital, will:

  • provide information on the latest 18 month data from the Phase 1 trial at
  • explain what the “blood/brain barrier” is and why it is important to the treatment of NPC,
  • outline who to contact for more information about the NPC study in the UK, and
  • be available to answer any questions you may have.

Details and Registration

  • Date: 6 July 2016
  • Time: 20:00 p.m. BST/3:00 p.m. EST

To register, please visit

https://attendee.gotowebinar.com/regist…/1338775628948833538. If you would like to access a playback of this Town Hall Webinar, please email me at Carrie@vtessepharma.com. You may also use my email to submit questions in advance.

 


The University of Notre Dame launches the Ara Parseghian Medical Research Fund

ara_parseghianfund_blue2

In 2010, the University of Notre Dame and the Ara Parseghian Medical Research Foundation formed a partnership dedicated to finding a treatment for Niemann-Pick Type C (NPC).  Through this partnership the University and the Foundation jointly fundraise for NPC research and support the administration of grants, internally and externally, to researchers around the globe.

Now, the University is poised to launch the Ara Parseghian Medical Research Fund that will take on the roles and responsibilities of the Foundation and drive the Foundation’s fundraising and research efforts to find a cure.  The University is also pleased to announce Sean Kassen, PhD, as the new director of the Ara Parseghian Medical Research Fund.

Over the next several months the foundation will be moving all of these functions from the granting process, marketing/communication, and fundraising efforts to Notre Dame.  

Please know that Coach Ara Parseghian as well as Mike and Cindy Parseghian will continue to be actively involved in fundraising and supporting the new Ara Parseghian Medical Research Fund at Notre Dame for many years to come.

 


 

Join us for the Parseghian Classic in 2017

Benefiting Niemann-Pick Type C disease research

Email Sean Kassen at skassen@nd.edu for more information

 

Parsegihian Classic Benefitting Niemann-Pick Type C Research at the University of Notre Dame

Check out Photos from this year's Parseghian Classic



 


Lakeshore Middle School Joins the Fight for a Cure!

Thank you to the students of Lakeshore Middle School located in Stevensville, MI.  Every year the students, faculty, and staff host fundraisers to raise $s for the Ara Parseghian Medical Research Fund.  They put on a range of events including a pie throwing contest where students can make a donation to throw a pie at their teacher!  This event alone raised over $1000 to support NPC research efforts. 

It is inspiring to see students at a young age engage in philanthropic endeavors and we are proud of the Lancers for their efforts.

Pie Contest

Child Image

A Legacy of Hope

From beautiful identical twins to aspiring firefighter, the children affected with Niemann-Pick Type C will inspire you with their stories of hope and courage.

Read More

Donate Now!

Join the Fight

The Parseghians, Notre Dame and the families that battle Niemann-Pick Type C everyday need your help and support in the fight against NPC.

Join the Fight - Donate Now

Ara Face

A Message From Ara

I am asking for your support and that of your family and friends as we commit to victory against Niemann-Pick Type C, the neurodegenerative disease that has claimed the life of my three youngest grandchildren. 

Read Ara's full statement

About NPC

Niemann-Pick Type C (NPC) is a rare and deadly neurodegenerative childhood disease that primarly strikes children.
Learn more about NPC.

Notre Dame, in partnership with the Ara Parseghian Medical Research Foundation, is actively engaged in research seeking a cure for NPC.
Learn more about our efforts

Support our research - Donate Now

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