Jim and Mary Bush – Grandparents to NEHI Warrior Mason

We are the proud grandparents to 6 amazing grandchildren. Our grandson Mason (8) has a rare lung disease called Neuroendocrine Cell Hyperplasia of Infancy; NEHI for short. There are less than 1,000 cases known worldwide. Our son Jonathan and his wife Carly started a foundation to bring awareness to NEHI and to support much needed research. The NEHI Research Foundation has the privilege of participating in the Million Dollar Bike Ride put on through Penn Orphan Disease center this June. We are excited to be riding in the virtual Million Dollar Bike Ride event to support Mason!

Our Grandson Mason’s Story

Mason was born full term October 2011. Within a couple of months his parents started noticing him struggling to breathe at times. After countless doctors appointments, multiple pneumonia diagnoses, and a few hospital stays they were sent to see a specialist in Colorado. Mason had several tests including a lung biopsy that ultimately led them to his diagnosis of NEHI. There are no treatments or cures at this time, only the supportive care of oxygen. Mason required oxygen 24hrs a day for awhile and then was able to go down to only needing it while asleep, at altitude, and during times of illness. He still uses oxygen while he sleeps and often needs it with illness or unexplained flare ups. Mason is a strong 8yr old boy who doesn’t let NEHI slow him down but with the lack of research we have no way of knowing what the future may hold for him.

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!