Mason is extremely excited to be participating in the ride this year. He will be riding remotely on June 13th as other NEHI Warriors and their families ride across the country and even the world!

Mason’s Medical Journey

Mason was diagnosed via lung biopsy, infant pulmonary function test, and a CT at 17 months old in Denver, Colorado. Like most NEHI children Mason was put on 24/7 oxygen after his diagnosis. Over the years he has been able to transition to only requiring oxygen while sleeping, at altitude, and at times of illness or flare ups. He has become a pro at regular doctor visits and loves sounding silly while wearing his percussion vest. Mason is now 8 years old and his journey with NEHI is much the same today. We don’t know when/if he’ll be able to not use oxygen anymore and there are no other treatment options available. The question “What does a future with NEHI look like?” is not one we can answer; we live with NEHI day by day never certain what the coming years hold medically for Mason.

Mason’s Young Advocacy Journey

Mason has always been very open and vocal about NEHI and truly sees it as a part of who he is but doesn’t let it define or limit him in any way. He has taken an active role in the foundation from day one and continues to find ways to become more involved. What impresses us most is his compassion for other NEHI kids, he always encourages us to spend time offering advice and guidance to families. He becomes so engaged hearing their struggles and triumphs; he truly has a heart of gold. He is a natural when it comes to advocacy and I know he’s going to make a difference for NEHI Warriors everywhere!

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!