iiinova — where your digital self keeps evolving

Nicole Frankenstein @stevielicks.bsky.social · 23/09/2026

Was considering changing my voter registration to Independent. However I will now wait until I can vote for any other presidential primary candidate other than @gavinnewsom.bsky.social He is crapping the bed in this final stretch and not even Camille’s trolling can save him.

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Nicole Frankenstein @stevielicks.bsky.social · 14/09/2026

I was an invited speaker at this year’s CCP Phenogenomics Conference in Prague. My talk title was “Decoding patient voice when patients cannot speak: The caregiver role in therapeutic development for ADSL Deficiency”. #ccpphenogenomics

A white woman in pale blue top and tape trousers presses her hands together while answering an audience question at a conference lectern. Out of focus behind her are a group of people listening.

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Nicole Frankenstein @stevielicks.bsky.social · 12/09/2026

The CCP Phenogenomics Conference was a wonderful time of learning and collaborating. I am very glad to have met so many brilliant scientists doing this important work in genomics, mouse modeling, and rare disease. Looking forward to next time!

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Reposted by Nicole Frankenstein

Czech Centre for Phenogenomics (CCP) @czphenogenomics.bsky.social · 12/09/2026

💙 #CCPConference2026 closed with a powerful patient-research session: SPATA5, Angelman syndrome & ADSL deficiency, bringing families, foundations & scientists together. The conference concluded with Kiran Musunuru on therapeutic gene editing. 🧬

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Nicole Frankenstein @stevielicks.bsky.social · 08/09/2026

I’m in my ancestral homeland for the first time: the airport in Frankfurt. A tiny, gorgeous mouse was in the ladies restroom in terminal A. I am home.

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Nicole Frankenstein @stevielicks.bsky.social · 04/09/2026

Honored to represent the ADSL Community at CCP in Prague next week. @czphenogenomics.bsky.social

8th CCP Phenogenomics Conference 2026
Prague and on-line 9-11 September
Patient Representative Speaker Nicole Lytle
“Decoding Patient Voice when patients cannot speak: The caregiver role in therapeutic development for ADSL Deficiency”
September 11th @ 16:15 CEST

Images: photo of Nicole, a white woman in a blue shirt
Logos for the CCP and Rare Birds Foundation

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Reposted by Nicole Frankenstein

Mother Jones @motherjones.com · 04/09/2026

We identified the top 100 sprayers of the controversial weedkiller Roundup in California—a state that produces more than three-quarters of the nation’s fruits and nuts and nearly half of its vegetables. Check out our new searchable database to find out who’s at the top of the list. bit.ly/3SqKXDZ

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Nicole Frankenstein @stevielicks.bsky.social · 28/08/2026

The question isn’t ‘do kids with developmental epilepsies communicate?’ Rather it’s ‘how can WE listen and then connect with joy?’ Learn more here deepconnections.net/event/listen...

Poster for a webinar “Listening Out Loud: Communicating with Joy”

What if we learned to listen to everything a child is saying!
featuring Bethany Brown, SLP and Shanna Allman, Professional Therapeutic Healthcare Clown

September 10th at 2pm ET

Presented by DEE-P Connections and Rare Birds Foundation

Images show a disabled child with pink glasses and her caregiver, as well as headshots of Bethany Brown, a white woman with long brown hair, and Shanna Allman, a white woman dressed as a clown with a red nose

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Nicole Frankenstein @stevielicks.bsky.social · 25/08/2026

I’ve no idea how it happened, but ADSL Deficiency was added to the SSA Compassionate Allowance list. If it was one of you, thank you 💜

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Nicole Frankenstein @stevielicks.bsky.social · 23/08/2026

People that compare hated politicians to folks with intellectual disabilities are lazy and ableist. Interestingly, two reasons we tend to hate the hated politicians!

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Reposted by Nicole Frankenstein

Digital Brain @yourdigitalbrain.bsky.social · 09/08/2026

This is fore-edge painting: a scene hidden in a book's gilded edge, invisible until you fan the pages just right. Here it meets Tolkien's Lord of the Rings.

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Reposted by Nicole Frankenstein

Nicole Frankenstein @stevielicks.bsky.social · 12/06/2026

@frenchpurine.bsky.social Hello! I am a purine collaborator! My kids live with ADSL Deficiency and our organization Rare Birds Foundation works with an amazing group of researchers. Can we chat?

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Reposted by Nicole Frankenstein

Nicole Frankenstein @stevielicks.bsky.social · 12/07/2025

Parents of children with rare diseases are charged with raising the child and also CURING THE DISEASE. What my brothers and sisters in arms are doing is nothing short of heroic. Thanks to my kids Jonah and Flora for showing me what ‘brave’ really is. #ADSLDeficiency

A white family of four poses for a photo with a beach and cloudy sky in the background. The children in the foreground are both in wheelchairs, mom and dad are smiling. They all wear sunglasses.

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Nicole Frankenstein @stevielicks.bsky.social · 18/06/2026

Yesterday, Rare Birds Foundation awarded our first Caregiver Retreat Grants to 3 moms raising kids with ADSL Deficiency. Yesssss… #ADSLdeficiency #caregiver #purines

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Nicole Frankenstein @stevielicks.bsky.social · 12/06/2026

@frenchpurine.bsky.social Hello! I am a purine collaborator! My kids live with ADSL Deficiency and our organization Rare Birds Foundation works with an amazing group of researchers. Can we chat?

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Nicole Frankenstein @stevielicks.bsky.social · 08/06/2026

Flora and I spoke at #grandrounds for the Undiagnosed Disease Program during our visit to the NIH alongside Dr Bill Gahl. Educating clinicians about #ADSLDeficiency and the work of Rare Birds Foundation was deeply meaningful, especially with one of my own Rare Birds at my side.

Onstage at the Lipsett Auditorium at NIH, a mom sits beside her daughter who is in a wheelchair. They are being asked a question by Dr Bill Gahl with a large screen behind them that reads “Adenylosuccinate Lyase Deficiency”. Special thanks to Nurse Sandy Chow and To Dr. Oleg Shchelochkov who gets photo credit 💜

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Nicole Frankenstein @stevielicks.bsky.social · 02/06/2026

Last week my family traveled to the #NIH to participate in medical research and receive care for #ADSLDeficiency. I am in awe. Grateful for science and NIH.

A team of doctors, scientists, nurses, helpers and parents surround Jonah and Flora, 2 kids in wheelchairs, in the atrium of the Clinical Center at NIH

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Nicole Frankenstein @stevielicks.bsky.social · 28/05/2026

We’re halfway through our week at the #nih. It has been an incredible experience and I’m so thankful to American taxpayers for funding studies into complex pediatric disorders like #ADSLDeficiency

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Nicole Frankenstein @stevielicks.bsky.social · 19/03/2026

Fine. Passports should be free then.

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Nicole Frankenstein @stevielicks.bsky.social · 19/03/2026

The chemical building blocks of DNA are present on asteroids!?

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Nicole Frankenstein @stevielicks.bsky.social · 19/02/2026

Loved Mikaela Shiffrin being tipsy on prime time 🇺🇸 #espressomartini

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Nicole Frankenstein @stevielicks.bsky.social · 14/02/2026

Folks who read Wuthering Heights after seeing that movie will be soo sad.

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Nicole Frankenstein @stevielicks.bsky.social · 12/02/2026

What do they do to make Provolone cheese taste like vomit and why don’t they stop?

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Nicole Frankenstein @stevielicks.bsky.social · 06/02/2026

I hosted an ADSL Deficiency family meeting with Dr Oleg from the NIH today for Rare Birds Foundation. Rare Birds patients make up 33% of enrollees in the Natural History protocol, the largest patient group represented! It’s been hard work to get families enrolled and seeing that stat made me 🥹

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Nicole Frankenstein @stevielicks.bsky.social · 25/12/2025

Christmas Rainbow over Monterey Bay. 🌈

Landscape photo of the Monterey Dunes in the foreground, and a moody, stormy sea in the back. A small rainbow dips into the horizon in the far distance.

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Nicole Frankenstein @stevielicks.bsky.social · 17/12/2025

Congratulations to the patient advocacy groups who made this happen. #raredisease #advocacy

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Nicole Frankenstein @stevielicks.bsky.social · 02/12/2025

Rare Birds Foundation is raising $2100 to give 3 parent caregivers a break! Can you help? givebutter.com/G8KvAp

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Nicole Frankenstein @stevielicks.bsky.social · 06/11/2025

I’m a dues paying member of my labor union, United Domestic Workers. ✨ #union #udw

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Nicole Frankenstein @stevielicks.bsky.social · 20/10/2025

Are taxes going to be pro-rated for Americans this year? We shouldn’t be taxed for the days our government abandoned its duty to the people IMO

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Nicole Frankenstein @stevielicks.bsky.social · 17/10/2025

Looked like #McConnell fell today because he was too embarrassed to use his mobility aid or accept the arm of his aide. That’s #ableism folks!

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Nicole Frankenstein @stevielicks.bsky.social · 17/10/2025

On October 15th 2025, Rare Birds Foundation hosted our 2nd annual Research Symposium for ADSL Deficiency. I’m blown away by the progress of the past year and excited for what it means for people living with ADSLD.

A Flyer for the Symposium titled “Rediscovering ADSLD”. A collage shows pictures of 40 of the 200 known individuals affected by the disorder, and there are details to join the event, which has since passed.

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Nicole Frankenstein @stevielicks.bsky.social · 09/10/2025

Allopurinol in young children with Adenylosuccinate Lyase Deficiency Disorder (ADSLD) improves behavior and decreases hyperactivity, but does not affect seizures. Study took place in France, 8 patient cohort, no effect on young adults. Thanks to @jimd-editors.bsky.social for this stellar resource

Infographic with study design, cohort size, Well- Tolerated Dosing (maximum 400mg/day for a child, 900 mg/day) and Results.

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Nicole Frankenstein @stevielicks.bsky.social · 26/09/2025

Our families insurance premium is increasing 12.7% this year. How much of that increase do you think the employer will cover?

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Nicole Frankenstein @stevielicks.bsky.social · 03/09/2025

I’m at a conference in my pajamas today! Attending Global Genes and Boston Children’s Hospital Rare Drug Development Symposium to learn the latest on how I can D.A.R.E. to get my kids on drugs. #ADSLDeficiency #raredisease #drugdevelopment

A sleepy white woman with an open mouthed smile sits with her laptop open to the Conference Zoom. The laptop screen shows the “Rare Drug Development Roadmap”. Her kitchen table is a mess in a way that says “Children live here.”

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Nicole Frankenstein @stevielicks.bsky.social · 20/08/2025

I am a mother of disabled children. I am a teacher, a nurse, a weight-lifter, a pharmacist, a therapist, a neurologist, a researcher, a bitch, a Karen, a super-mom, a president, a failure, an inspiration, a tragedy, a voice of the voiceless. I am America.

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