Community Hero: Grant Bonebrake champions those with rare diseases and wins national award
While growing up in La Jolla, Grant Bonebrake underwent a school-required hearing test in fifth grade in which students push a button when they hear a sound. He waited a second to hear the sound and push the button. Then a few seconds. Then a minute. Then a few minutes.
He waited there with the device in his hand but never heard the sound.
For the record:
12:33 p.m. Dec. 21, 2020This article was updated to correct that the award was given by the EveryLife Foundation for Rare Diseases. It also was corrected to state that Grant Bonebrake grew up in La Jolla and now lives in Pacific Beach.
He and his mother, Lisa Bonebrake, found an audiologist to further test his hearing. The expert told the family that Grant would need hearing aids after 11 years of normal hearing.
With a family history of kidney disease, Lisa searched online for “kidney disease and hearing loss” and discovered Alport syndrome, a rare disease that causes kidneys to decline in function over time and frequently results in hearing loss and/or vision abnormalities.
Grant underwent a biopsy on his 12th birthday that confirmed he had Alport syndrome. That’s where his journey toward rare-disease awareness and advocacy began.
And while his work is nowhere near done, Grant, now 18, was recently awarded the Rare Disease Legislative Advocates’ RareVoice “Abbey” Award for Federal or State Advocacy by a Teenager by the EveryLife Foundation for Rare Diseases during a virtual ceremony Dec. 10.
Grant, who now lives in Pacific Beach, has been involved with the Alport Syndrome Foundation and other similar organizations since middle school, starting with support group meetings for other children his age going through the changes associated with the disease. These meetings, he said, “helped a lot” because “I was a very active kid … and to go from that to managing hearing aids, new medications and their negative side effects was a big change and it helped to meet people that understood that.”
To start a positive change, and moved by the support group meetings, “I wanted to do everything I could to help with Alport Syndrome. I was to spread the word, raise funds, whatever I could.”
And he did.
Grant has spent the past six years speaking out about Alport syndrome and the need for legislative changes to support those with it and other rare diseases. At 14, he addressed politicians on Capitol Hill as the guest of the National Kidney Foundation.
“Grant was really great about connecting his story to the legislation, specifically the Living Donor Protection Act,” his mother said. “He just so easily connects with people and it doesn’t matter what your rare disease is, whatever comes with it, Grant can cut through that and bring people together and I am so proud of that.”
The Living Donor Protection Act, introduced in the U.S. Senate in February 2019, would prohibit discrimination based on a person’s status as a living organ donor in the offering, issuance, cancellation, coverage, price or any other condition of an insurance policy for life, disability or long-term care. The bill also specifically includes recovery from organ-donation surgery as a serious health condition that entitles covered private-sector and federal civil-service employees to medical leave.
In his junior year, Grant was accepted to be in the Young Adult Representatives of Rare Disease Legislation program to speak at various legislative levels.
In addition to addressing legislators, Grant said he wanted to reach families one by one to make them feel less alone. “Every single person matters to me,” he said.
Grant said he wants to continue to work with the groups “for as long as I can” and continue to advocate. “I want to work my way up through these foundations. On a recent college application, under ‘possible future,’ I put National Kidney Foundation president. I see myself on this path for a while because it’s meaningful and I want to live my life doing what’s good for myself and for other people. That’s what I’ve worked for a while. You expect to tire of this ... but I love it. All of it. I know I am doing my part.”
Through his work, Lisa said she has seen a “transformation” in her son. “There is a real joy for his dad and I to watch him go through this, from a young man with a heavy serious diagnosis and heavy burden, and transitioning from a hearing world to a non-hearing world without his hearing aids. To watch him accept and embrace … this and watching him help other young people has been great to watch.”
She added that she loves the name of the award Grant received because “he uses his voice to encourage legislators to include the voice of the patient in all of this. When a young man walks into their meetings and says, ‘This affects me, this affects my family, this affects my life’ … it makes a really big difference. It’s not always easy to tell your story when your whole life changes and you have to wear hearing aids in middle school and high school. It’s brave and inspiring to watch him do that.”
To learn more about Alport syndrome and the Alport Syndrome Foundation, visit alportsyndrome.org.
The La Jolla Light’s Community Heroes series for the holiday period highlights people who aren’t often in the news but make a difference in the lives of others. ◆
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