Past Events

Another Success! The 2017 Million Dollar Bike Ride!

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We are so excited to share the news of another successful Million Dollar Bike Ride!  The event, sponsored by the Penn Medicine Orphan Disease Center, uses all proceeds raised by participants to directly fund life-saving rare disease research.  Team NPC had a great day and a great turn out!   Thanks to all who participated and supported us in raising funds for Niemann Pick Type C research.

You may continue to DONATE HERE to help us meet the Team NPC Goal!

We look forward to seeing you again next year!

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2nd Annual Beef & Beer was a Fantastic Success!

In conjunction with World Rare Disease Day on February 28, we held our 2nd Annual Beef & Beer on March 4, 2017 at the Newportville Fire House.  The evening was a huge success with music by the band Defying Gravity and DJ Rich.   Over 40 baskets donated by local businesses and individuals were raffled off and a visit by Congressman Brian Fitzpatrick added to the success of the evening.

Our heartfelt appreciation to all who made this such a successful event!

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Amazing Fundraiser at The Palz Tap House with a Surprise Meeting!

Many thanks to the Violi Family and The Palz Tap House for a remarkable fundraising event.  The night was filled with family, friends and some surprise guests!   We appreciate all the support from The Palz Tap House and all who attended.   We are grateful for our new found friends, The Lang Family!

A Surprise Meeting for Two Families with Much in Common

Ed Lang arrived at the hospital for a medical procedure and, as he often does, he inquires of the medical professionals he sees if they have ever heard of Niemann Pick Disease. Most often those he speaks with do not know of Niemann Pick.   However, on this day he meets with a nurse who does know someone with the disease, her neighbor’s children.   And so began a discussion of Niemann Pick and her neighbor’s sons.

Ed and Jean Lang had two sons, Daniel and Douglas, who were identified over 40 years ago with the symptoms of Niemann Pick. At the time it wasn’t a disease with a name and was called Lang’s Disease until a formal name of Niemann Pick Type D was given to their sons. Daniel and Douglas lost their battle with this disease at ages 11 and 12, respectively. Through the years the Langs dealt with the loss of not one, but both of their sons. Their daughter, Donna, now lives in North Carolina with her husband Steve and they were visiting her parents along with 2 of their sons on that day when Ed returned from the hospital.

When Ed arrived home that day he shared the story of meeting the Coppola’s neighbor and about the fundraiser to be held later that week for the Andrew Coppola Foundation.   The entire family attended the fundraiser at The Palz Tap House on August 16, 2016.   It was such a blessing for everyone to meet the Langs and especially for the Coppolas to know that there was another family right in their local area who truly understood what they are going through.  It was truly a special evening and the start of an encouraging friendship for both families.

Pictured below are the Coppola and Lang families enjoying a fun evening at The Palz Tap House!

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Thanks Texas Roadhouse for Another Successful Fundraiser!

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Thanks to all for the impressive results from the Texas Roadhouse fundraiser!  The management at the Texas Roadhouse in Bensalem, Pennsylvania informed us that it was the second best fundraising event the restaurant has had at that location to date!  Your support means so much to us and we are grateful for our outstanding volunteers and all those who helped.

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Million Dollar Bike Ride 2016

The Million Dollar Bike Ride was held on May 7, 2016 and is the only fundraiser held in the United States that matches donations dollar for dollar for “Orphan” diseases like Niemann-Pick type C.

Team NPC is a group of dedicated families and friends who all know or love someone affected by Niemann-Pick type C disease.  Along with the researchers studying the disease, we are raising funds for research that will lead to a treatment or cure for this devastating and fatal neurodegenerative disease.  Our team participated again in 2016 in the Million Dollar Bike Ride and has funded four research projects since 2014 and 2015 successfully raising $50,000 each year.  These funds have been matched by the University of Pennsylvania to $100,000 each year in 2014 and 2015.  Totals for 2016 will be posted as soon as they are available.

Click here for more information on Team NPC

Vtesse Clinical Trial – For more information see the links below

As of July, 2016, Andrew and David continue visiting Chicago every two weeks as part of the Vtesse clinical trial.  Since September, 2015 they have flown back and forth for treatments as part of the second phase of the Cyclodextrin trial.  This study will continue for one year and will evaluate the effectiveness and safety of Cyclodextrin in patients with Niemann-Pick Type C1 disease.   Two-thirds of the patients in the study will receive the actual drug and the remaining one-third will receive sham control.

It is estimated that only about 50 people will be included in this study so we are very thankful our sons are able to be part of this important research which began in October 2015.

For more information about this trial click here or here.  For an informative video about the Vtesse trial and a glimpse of what Andrew and David go through every other week in Chicago, click here.  While Andrew and David are not in this video, this is exactly what they experience.

 

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