Peter and Takako Jones Lab

08/25/2026

A number of people have asked how the lab is doing considering the Hawk fire in Reno, which is still going but not a risk to the university anymore. I guess we (Reno) made international news as we heard from Canada and Europe, too! UNR and the lab are fine, just a bit of smoke, the fire was a mile or so north of us and mostly going away from campus. Others in the area were not so fortunate. Charis' neighborhood had to evacuate and she stayed with us for a couple days down south and others in the lab took in displaced friends and family (and pets) or stayed with friends and family themselves, but otherwise the lab is OK. More than 45 houses were lost when the fire jumped the expressway! We never appreciated wildfire risk until we moved out west. Two years ago the Davis fire was a few miles from our own home. We are very grateful for the firefighters and first responders and National Guard that work so hard to keep us all safe.

We had actually taken a day off on Saturday to take the lab fishing on Lake Tahoe when we noticed smoke in the direction of Reno but had no idea how bad things were. See what happens when we take time off! We had a good time out anyway, didn't catch many fish, just enough lake trout for dinner. Thank you all for your concern. Thankfully Reno is recovering although the firefighters are still at it. We are all back at it in lab 🙂. Ning and Charis even submitted a paper today. Stay tuned for progress announcements soon.

07/16/2026

Friends of FSH Research has historically funded the most impactful FSHD research projects and continues to do so each year. In addition, they are great supporters of our lab, the FSHD pigs, and FSHD epigenetic testing. This is always a great evening with really cool auction items (and you can meet a number of FSHD researchers and some biotech, too). It is worth the trip out to Seattle!

✨🪻🪷🌿 Mark your calendars and save the date for a grand affair! Our Annual Gala and Auction will be held on Feb. 6, 2027 - plan to join us for a wonderful night of glamour and giving at Gatsby's Garden Party. 🪻🪷🌿✨

06/20/2026

On World FSHD Day 2026 we are happy to join and support the efforts to spread awareness about FSHD. However, most in the community already know who we are. In the Jones lab our efforts are 100% dedicated to the worldwide FSHD community through research into FSHD pathogenic mechanisms, development of therapeutics, creation of research tools (FSHD mice and minipigs) and providing research-grade FSHD diagnostics. As you all spread awareness about FSHD to your friends and into new communities, make sure to let people know that if the symptoms of FSHD sound like something they see in themselves, their family members, or friends, that we are here to help with no-cost confidential FSHD testing through Myfshd. And for those newly diagnosed with FSHD, help is on the way with current clinical trials showing real promise and even better therapeutics coming soon.

05/30/2026

D4Z4caster is finally out! Posted on the bioRxiv open access preprint server while in review.

http://biorxiv.org/content/early/2026/05/29/2026.05.26.727947

We have been performing our FSHD research testing since 2019, optimizing the metrics and adjusting the technology ever since. FSHD genetics are truly complicated; epigenetics provide a lot of clarity. Dr. Takako Jones invented the methylation assay in 2014 (others have copied, her's is the original and still the best), transitioned it to next-generation sequencing to lower costs and increase power in 2021 and Dr Oliver King wrote the program and did all the mathematical calculations and statistical analyses. Brooke, Maryam, and Taylor did the bulk of the lab work and analysis, which took tremendous dedication, attention, organization and precision in addition to the molecular work. Thank you to all the participants around the world that provided saliva samples for this work. Quartiles and averages are pretty good, not perfect, for assessing FSHD. However, we now have a probability calculator for methylation scores from different metrics. More papers will soon follow showing the utility of the technology and results of our worldwide study. Huge thanks to Friends of FSH Research, FSHD-Global Research Foundation, FSHD Canada Foundation, the Stollery Foundation, and the Mick Hitchcock, PhD Endowed Chair in Medical Biochemistry at UNR Med for supporting this effort to decrease the cost of FSHD diagnostics and increase accessibility to FSHD diagnostics (yes, it is still a research test in the USA). Also thank you to the many FSHD patients and families that "pay it forward" through donations and awareness.

Our research testing (see Myfshd for more information) is no-cost to participants but there is a lab cost for the testing and thanks to these amazing foundations and generous donors we are able to keep it no-cost and thus available to everyone, everywhere, no matter one's circumstances. More to come!

05/15/2026

05/15/2026

We were invited to present at the American Society of Gene and Cell Therapy Annual Meeting in Boston, MA this week at their session on "Overcoming hurdles in musculoskeletal gene therapy." I presented our CRISPRi work, but also the specialized muscular dystrophy relevant (and FSHD-optimized) gene therapy promoters and the all-in-one CRISPR gene therapy cassettes created by Charis Himeda, PhD in the lab. I then introduced everyone to Dr. Takako Jones' FSHD-like mouse and FSHD-like minipig models for FSHD therapeutic development and for building muscle back. Overall, pretty well received. I do not go to many meetings, I turn down most requests since we are so busy (and not so popular). The organizers were happy, telling me it was good to hear from someone new and also they really support our push for the value of large animal models in neuromuscular disease gene therapy development. I attached some slide shots, if interested.

03/29/2026

We were doing AI drug screening long before it was fashionable. Our approach is to first identify viable therapeutic targets that are key positive regulators of DUX4 (Himeda et al 2018), make conditional knockout mice to prove they are safe targets when knocked down (unpublished), then design small molecule compounds to inhibit their activity and test in FSHD muscle cells. Here, we partnered with Atomwise, Inc (now called Numerion Labs) who used their AI platform to screen millions of compounds resulting in ~70 to test in cells for repression of DUX4. We were successful in finding several great repressor molecules, however, not a great drug (yet). The screening project was started by Hannah Moore, an absolutely spectacular undergraduate researcher in the lab who has since moved on to Johns Hopkins PhD program, and then taken on by Dr. Ning Chang. Ning has since used this tool compound in an exciting study on regulation of DUX4 that will be coming soon.

Posted in the open-access preprint server while in review.

https://www.biorxiv.org/content/10.64898/2026.03.09.710626v2

12/19/2025

Here in the Jones Lab we are all FSHD research scientists at heart, we live and breathe science; however, we are not total lab geeks. We also like science fiction 😉. And we do love to support our lab family. After all, some important sci-fi author almost certainly once said “today’s science fiction is tomorrow’s science fact,” so where else are we going to get our ideas?

So here is the BIG NEWS: The Wake family is back! Yes, those oddball relatives of the Jones lab (at least it feels that way) return in the second book in the CRISPR Evolution series, “Finding the Gift”, And yes, I have actually read it. And it is great! And not just because the author is our own CRISPR Goddess.

The biomedical research world knows her as Charis Himeda, PhD, inventor of CRISPR inhibition for FSHD, expert in muscle gene regulation, and co-founder of Renogenyx, Inc. The literary world knows her as the award-winning author Charis Jones of https://www.charisjonesbooks.com/. And yes, FSHD patients and MyFSHD podcast listeners know her as The CRISPR Goddess (I know it gets a little confusing, but she has too many talents for just one name – and we appreciate the nod to the Jones Lab name).

Now, truth be told, Dr. Himeda has been with the Jones lab since 2011, but it was years before I would read any of her literary works because she has always been family and you know that you always have to read your family’s stuff and go to their plays and ballets and recitals and marvel at their art, and put it on the fridge and tell them it is all great (mine really was) when it is really only great because you appreciate your loved ones and want to encourage their efforts. It’s mostly great to you because of who they are. Yes, I am a terrible brother and uncle and cousin and family friend because I’m not going to faux appreciate a bunch of dribble just because I have too. But I digress…. I don’t know why but one night I finally actually read one of her short stories, “Green-eyed Monster,” probably because she won some prestigious awards to put on the lab fridge or perhaps because she was selected to contribute stories to real anthologies such as “Wild – Uncivilized Tales from Rocky Mountain Fiction Writers” and “The Best American Mystery and Suspense (2021)”, so I figured someone else likes this stuff, let’s see If she’s really “all that and a bag of chips” outside of lab. Honestly, she is. It was one of the best (published) short stories ever; and her unpublished ones are brilliant, too. It’s as if she is a writer and curing FSHD on the side instead of the other way around. Anyway, when “CRISPR Evolution” came out and she hinted some Jones Lab characteristics were infused, I actually read it and totally connected with the Wake family and their scientific frustrations, battles, and ethical dilemmas, etc... And while “Finding the Gift” continues with the same characters, it is notably different, although written with the same captivating brilliance and excitement as her other stories and will make you stay up too late as you won’t want to put it down (trite but true).

I don’t know that I like reading Sci-Fi in general, but I love this author and I love this series. So, spoil yourself and try them both.

12/16/2025

Happy Hanukkah, Merry Christmas, Happy New Year, and best wishes from the Jones Lab no matter how or if you celebrate the season.

Our 2025 Jones Lab Holiday Baking Day was wonderful, we love and appreciate our lab family. We were so happy that Maryam and Heinrich came back to the lab home from Cali. This year we even incorporated some spontaneous salsa dancing to take a break from decorating. Yes, the lab is getting smaller (only Brooke was unable to make it, and was missed), but as in the past the group is still shockingly efficient and impactful, in the kitchen AND in the lab. And I’ll need all this sugar with Yosuke’s paper, Ning and Hannah’s paper, and two diagnostic papers (Takako, Maryam, and Brooke) all needing to get out the door by the end of the year. Plus, the first pig paper is on its way, too.

In 2026 you will see our first FSHD-like pig paper, our pediatric Australian epigenetics paper, another advance in CRISPR inhibition technology, Ning’s mechanistic study of the locus, and several more epigenetic papers. We are also moving forward with our collaborations with hospitals in Vietnam, Ukraine, Egypt, Taiwan and Algeria to continue to help those in need. We are also very excited about working with the Chinese FSHD patient organization and help to facilitate a FSHD meeting in China in the fall.

2026 will also see several more clinical trials in the FSHD space. As with this year, some are worthwhile enrolling while others unfortunately, in our opinion, are not worth the time, effort or muscle. Stay tuned to the MyFSHD podcast for our unfiltered (and unsponsored) scientific opinions or feel free to email us directly with your questions, we are always happy to provide our scientific opinions and feedback.

We hope you all will stop by the lab if you are ever in the area and say Hi, we’d love to meet you in person, answer any questions, and show you around.

Thank you all for your support.

12/01/2025

Friends of FSH Research has always funded the most impactful FSHD research and, with your help, will continue to do so.

Giving Tuesday - join with us to find a cure!!

https://secure.givelively.org/donate/friends-of-fsh-research/2025-giving-tuesday-4acure