Mica Hammond Fund

09/01/2026

TO KNOW THE SOLUTION, KNOW THE PROBLEM
By Helena Hammond

“Holy crap! We finally have an answer!”

Rachel Hinken’s son Oliver is 11. For most of his life she had been looking for an answer.

A diagnosis

To no avail.

Finally, however, she got one

Thanks to AI.

This summer we’ve seen some of the most significant examples yet of AI finding diagnoses for the long-term undiagnosed:

Boston Children’s Hospital published a study of 376 pediatric cases–kids who had been sequenced, reviewed by experts, still no answers. An all-too-common situation.

The study took their data, ran it through AI
18 children got diagnosed
All confirmed by doctors.

Another study used a tool called Talos to reexamine stored genomic data for 4,735 undiagnosed patients

Data that was just sitting in a folder, already examined, reexamined. No movement.

The AI found 241 diagnoses.

A spring study in the journal Science on AI beating doctors to diagnoses noted that the difference was most profound on rare and complex cases. About half of rare disease patients are children. For them or anyone else, a diagnosis–especially after so long with no answers–is everything.

Oliver was late to speak, late to walk, 0th percentile for height. Doctors seemed unconcerned. But didn’t have answers.

His mom was able to get one photo of him uploaded to Face2Gene, an AI facial analysis genetics tool used by healthcare professionals.

And just like that, a match: trichorhinophalangeal syndrome (TRPS)

Genetic testing confirmed it
And revealed she had it too.

To be clear, AI doesn’t diagnose–it finds

Physicians diagnose–they confirm, they make the call, as they did in these cases

But without these leads, these diagnoses might have waited years

Or forever.

A diagnosis isn’t a solution

But the biggest step towards knowing a solution is knowing the problem

That’s what the diagnosis offers.

Mica Hammond passed undiagnosed. But we knew then that medicine would get smarter, technology better. We know more kids like Mica have more hope and more solutions today thanks to this.

So if you’re looking for answers:
Get your data
Keep your data
Keep your eyes open

The AI leaps are dramatic. And frankly daunting.

But more will get answers. More will get hope.

Read this recent Wall Street Journal story on AI solving medical mysteries: https://www.wsj.com/health/ai-is-helping-patients-solve-medical-mysteries-3c2d7c25?st=5Xr2ZV&reflink=desktopwebshare_permalink

08/17/2026

08/13/2026

One week from today, join NORD for a webinar on medically necessary nutrition and improving access for the rare disease community.

For many with a rare disease, medical foods and formulas are an essential part of treatment, but insurance coverage challenges can make them difficult to access.

Join us Wednesday, Aug. 19, from 1–2 p.m. ET to explore these challenges and opportunities to improve patient access. Register today: https://bit.ly/3U11gre

07/28/2026

From Cheryl: "Chester is our 8 yr old son, born with spastic quadriplegic cerebral palsy. Due to his condition, he is unable to eat by mouth and at 10 months old, had surgery to insert a g-tube. He was failing to thrive and was not able to eat enough by month to grow.

We had him on a pre-packaged blended commercial food for many years and seemed to be doing well.

Over the last couple of years, Chester developed an additional movement disorder (Chorea). At first we were in and out of the hospital trying to figure out what was going on. Nobody seemed to have answers. It was horrible watching him go into these episodes every 1-2 weeks. He had severe uncontrolled movements that lasted several days, but were not seizures. His body would twist and shake, and no medication seemed to help. When it would finally pass, he was left sore and so exhausted he would sleep 18-24 hrs.

He was exhausted and we were exhausted. We had no answers on how to manage it. In desperation, I started googling Chorea and what can set it off. In my research, I read that digestion issues could be a contributing factor. Chester is non-verbal so he wasn't able to communicate if he had pain, or felt uncomfortable in his stomach. We had noticed that his bowel movements were starting to become very loose. My husband and I talked about what we should do. Should we try changing his formula? He had been eating the same food year after year. Our bodies aren't meant to eat the exact same food day after day, year after year. We knew he didn't have any major sensitivities to foods so we thought we'd just try adding some variation to his food intake.

I used a stick blender that we already owned and started blending some of our home cooked meals and we replaced one of his packaged g-tube formula meals with a home blended meal. That was in June 2025.

We noticed an immediate change in his bowel movements. They improved significantly. And since June 2025, Chester went from having a Chorea episode every 1-2 weeks, to only having 3 major episodes in the last year.

I found blending with the stick blender very difficult. It didn't blend the food very well and when straining the food, a lot was left over. I knew he wasn't getting the full benefit of the blend. I looked at getting a more efficient blender, but the cost was significant.

I was so relieved when the Mica Hammond Fund replied to my application for assistance! We purchased a Vitamix Blender and it has been a game changer when making home blended meals! It creates such a smooth blended meal, that none of it gets strained out and it's smooth enough to go through his feeding pump.

The change in Chester's health has been drastic. I cannot explain what a relief it is to have such an extreme reduction in the movement disorder. He still has periods where he has very mild episodes, but they are easily managed and are very mild.

Thank you so much for your help in supporting our son's health and giving us more quality time with our beautiful boy!"

06/29/2026

Claire on her brother: "My youngest brother has a rare neurodevelopmental genetic disorder of the DHDDS gene. This disorder is one of countless rare genetic conditions without a cure or approved treatment, so symptoms are treated individually. My brother experiences developmental delays, epilepsy, ASD, ataxia, and motor difficulties seen in Parkinson’s Disease. He faces many challenges, but he is a light in all of our lives, bringing us smiles and laughter every day.

I am currently an undergraduate speech-language pathology student. My goal is to help children with disabilities find their voice in the world and continue to fight for awareness and more equitable opportunities for individuals with disabilities. The Mica Hammond Fund Scholarship will help cover the costs of my education. My family is extremely grateful to the Mica Hammond Fund and its donors for their aid and for their role in spreading awareness of rare and undiagnosed diseases."

03/01/2026

Today is . 💜 Over 30 million Americans live with rare diseases, and too many still face barriers to care simply because of where they live.

NORD’s State Report Card highlights both the progress we’ve made and the urgent gaps that remain. Every patient, in every state, deserves equitable access to care.

See how your state is doing and join us in calling for stronger protections: https://rarediseases.org/driving-policy/nord-state-report-card/

12/04/2025

🚨 BIG WIN FOR THE RARE DISEASE COMMUNITY! 🚨

Yesterday, the House passed the Give Kids a Chance Act (H.R. 1262) – a major step forward for the Rare Pediatric Disease Priority Review Voucher (PRV) program.

According to our latest analysis, the PRV program has already helped bring 63 new, innovative treatments to children with 47 different rare conditions. Real impact, real hope. But our work isn’t done.

Take action today. Contact your U.S. Senators and urge them to support the Give Kids a Chance Act here: https://rarediseases.org/driving-policy/take-action/ #/260

To learn what’s at stake, read NORD’s report on the impact of the PRV program on drug development:https://rarediseases.org/wp-content/uploads/2025/11/NORD-PRV-Policy-Report-November-2025.pdf