We are again raising money for the NEHI Research Foundation to support their efforts to fund research specifically for NEHI. Neuroendocrine cell Hyperplasia of Infancy (NEHI) is a chronic rare lung disease that was first identified and described in 2005. Our own NEHI Warrior, Ellie, has this rare lung disease. Since NEHI is a new disease and rare there is virtually no funding available to research this disease and understand the cause and develop treatments. In simple terms, Ellie has an abundance of the neuroendocrine cell in her lungs which makes it more difficult for her to transfer oxygen efficiently like other kids. No treatments exist only supportive therapies. Since the age of 20 months old Ellie has needed oxygen supplementation while sleeping to keep her oxygen saturation levels at a safe number.

Last year we raised money as part of the NEHI Warrior Team and rode our bikes in the Penn Orphan Disease Center's Million Dollar Bike Ride in Philly, PA. This year the event will be held virtually........which means Laura, Anabel (11), and Ellie (6) will ride 13 miles and Roberto will ride 72 miles! We would love your support!! The exciting thing about supporting us is that every $$ goes directly to fund a research grant to further understand this rare lung disease. Last year the NEHI Warrior Team raised $30,000 and the Penn Orphan Disease Center matched the funds for a total of $60,000!! 

We had planned on holding a fundraising event like we did last year and will miss seeing all the wonderful friends that came to support us......we always have next year!! We know these are difficult times for many people and we have lowered our raising goal as a result. Any support you can provide is so much appreciated. Stay tuned.....we may try to do some type of vdieo streaming the day we complete our bike rides!!

Our deepest appreciation - Roberto, Laura, Anabel and Ellie

NEHI Research Foundation is excited to announce that it has been selected to participate in Penn Orphan Disease Center’s 7th Annual Million Dollar Bike Ride taking place on June 13th, 2020! This is an incredible opportunity for the foundation and its community to raise awareness and fund meaningful research. Learn more about the event at: www.milliondollarbikeride.org

What is it?

This will be the Penn Orphan Disease Center’s (ODC) 7th Annual Million Dollar Bike Ride. While the ODC is dedicated year-round to supporting rare disease this is a once a year opportunity for rare disease groups to work directly with them on their mission. The event normally takes place in Philadelphia, PA but due to the COVID-19 pandemic they will be conducting the event as a virtual ride. Riders will ride in their own communities on Saturday, June 13th to support their respective rare disease groups!

​Why is it important?

As a selected foundation not only will we get to ride in the race and raise awareness for NEHI we will get to partner with the ODC to put out a pilot grant. The ODC will match up to $30,000 for each individual team participating. Not only that, they put out the call for applications internationally then use their in-house scientific advisory board to award the one with the highest scientific merit. The NEHI Research Foundation will set the parameters for what we’d like to support but the ODC does all the work for us. This means that every donation that is made (up to $30,000) will be matched dollar-for-dollar and will be directed to the grant to be issued by Million Dollar Bike Ride. Help support NEHI Research Foundation today and have your contribution go twice as far!