Brave Like Beck Foundation

03/18/2026

03/12/2026

Advocacy is more than important- it’s life changing for kids like Beck. 🩵

Immediate Advocacy Action Needed! Ask Your House Member to Support Mitochondrial Disease Research Funding in FY26 Appropriations.

The deadline is March 18 for representatives to sign on to a letter from the Congressional Mitochondrial Disease Caucus to support retaining mitochondrial disease as an eligible topic within the Congressionally Directed Medical Research Program and encouraging the National Institutes of Health to expand its commitment to mitochondrial disease research.

Click here to act now: https://igniteadvocacy.com/go/ask-your-house-member-to-support-mitochondrial-disease-research-in-appropriations/1008

See all advocacy action items at www.umdf.org/advocacy

03/04/2026

💄 Because there’s no better way to prepare for another round of chemo than in a Rapunzel wig, a gorgeous Bluey dress, with full glam makeup.

2️⃣ Kelly started her second round of chemo today and we’re proud to share that we’ve already received $9,050 in donations to support her family!

💰 100% of your donation goes directly to Kelly’s family!

https://www.bravelikebeck.org/donate

02/22/2026

Donations to Kelly’s family are completely tax-deductible through our foundation and 100% of your donation will go directly to her family. 🩵

https://www.bravelikebeck.org/donate

02/20/2026

❤️‍🩹 Update on our buddy, Kelly.

Since the end of September, cancer had been brought up and then ruled out multiple times. Unfortunately, after waiting many months in the unknown, her parents finally know the answer.

Kelly has been diagnosed with Mesenchymal chondrosarcoma, a very rare sarcoma with the HEY1–NCOA2 fusion, which makes it even more rare. The tumor’s location in her spinal cord is rare as well!

Last Tuesday, she had her port placed and completed her first week of chemo in Orlando. Because the tumor is still on her spinal cord, they are working around neurological bladder and bowel challenges. On top of that, her blood disorder from birth isn’t taking well to the chemo, presenting more challenges.

Moving forward she’ll have check-ups twice a week in Orlando and inpatient chemo once a month.

The Brave Like Beck Foundation is working closely wth Kelly’s family as we await for them to assess travel needs and therapy plans and will cover those expenses as they arise. 🩵

I had the absolute pleasure of meeting Kelly a couple months ago- she was spunky, full of playfulness, and a force to be reckon with. She’s so full of spirit and light. We pray for that flame to keep glowing as she enters her first stages of chemo. 💪 🙏

🚨 Kelly’s GoFundMe link: https://gofund.me/2ea8273c9

🐠 James Cronk with 772 Flight and Light Tackle Charters is offering a raffle for GFM donations. If you donate $100 or more to Kelly’s GoFundMe, your name will be added into a raffle for a Half-Day Charter Gift Card (valued at $550). More info below in comments.

We are the Passmore family, and we are asking for your continued love and s… Jane Passmore needs your support for Kelly Strong: Fighting Rare Childhood Cancer

02/06/2026

Radiant Waves Chiropractic has been an incredible resource for Beck! We saw such wonderful changes and shared our recommendation with another one of our buddies, Makayla’s parents. They too bring Makayla to Radiant Waves and have seen amazing progress. Two children with very unique needs, both showing incredible progress in their journey. We’re proud to partner with such a community driven and family-focused practice. 🩵

02/04/2026

DID YOU KNOW:

💡 There are approx. 7,000 known rare diseases.

🧬 Most rare diseases are genetic.

🔟 1 in 10 Americans have a rare disease.

🚨 90% of rare diseases are WITHOUT an FDA-approved treatment.

💔 Many rare diseases result in premature death of infants and young children, or are fatal in early childhood.

🩵 Beck’s specific rare disease is called Progressive early-onset encephalopathy with brain edema and leukoencephalopathy (say that 5 times fast). Also now known as PEBEL2. With only 17 known cases in the world, he’s the only infant to survive it. 🙏

01/25/2026

Brave Like Beck Foundation is PROUD to support M.E.'s Team with a gift basket for their silent auction at their clay shooting event this weekend! 🩵❤️

12/25/2025

Merry Christmas to our Brave Like Beck village!! 💚 ❤️