Thanks to Texas Roadhouse and everyone who came out to support our June 21, 2018 fundraiser! Your support means so much to us and we are grateful for all of our outstanding volunteers and all those who stepped in to helped. The support from Texas Roadhouse employees, from hostesses and hosts to all the cooks and servers, was just fabulous! Great food was enjoyed by all and the recipients of our fabulous door prizes were real winners!
Thanks to you the 2018 Million Dollar Bike Ride was another great success! This annual event, sponsored by the Penn Medicine Orphan Disease Center, uses all proceeds raised by participants to directly fund life-saving rare disease research. Niemann Pick Type C is just one of many rare diseases that receives research support from Penn Medicine. Team NPC had a great day and a great turn out! Thanks to all who participated and supported us in raising funds for continued Niemann Pick Type C research. Our hope is one day there will be a cure!
Samantha Bambino, Associate Editor of the Lower Bucks Times, recently published an article in the Bristol Times about Andrew and David Coppola living with the rare Neimann Pick Type C disease. Read more here at https://thebristoltimes.com/one-day-at-a-time-d10d3969d757
In association with World Rare Disease Day, we held our annual fundraiser on Saturday, February 24, 2018 at Hilltop AA in Oakford, Pa. Our heartfelt thanks must go to everyone who donated baskets, gifts, valuable time and great effort to make our 3rd Annual Fundraiser such a success! Local businesses and individuals were so generous in their support and donations and we couldn’t have done it without you! The evening included dinner, dancing and a visit from Congressman Brian Fitzpatrick.
Together we are helping spread awareness and education as well as raising funds to go towards finding a cure for Niemann Pick Type C (NPC) Disease.
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!
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!
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!
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!
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.
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.