Although research is ongoing there is a very strong indication that NEHI is genetic due to there being several families with more than one NEHI child. These precious #NEHIWARRIOR brothers are one of those families. 

Owen is a 1yr old NEHI Warrior! After being born a month early and spending a week in the NICU he was diagnosed with NEHI around 8 weeks old.  He is now gaining weight and going up in growth percentiles. After a long 9 months of searching he has an in-home daycare that will take him and his oxygen. Owen is always smiling, he is the most determined and happy little boy!

Big brother Emmett is a 3yr old NEHI Warrior. He was diagnosed around 3 months old via CT scan and then had a lung biopsy at 4.5 months to confirm. After diagnosis he was put on 6L high flow oxygen and is now down to only requiring 2L during the daytime, which is awesome! He’s gaining weight well and hasn’t been to the ER or been admitted to the hospital in almost two years. The most recentl hurdle Emmett has faced is finding a way for him to carry around his own oxygen. He now has a backpack that fits what he needs and he can carry it around for short periods all by himself!

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!