Rare Disease advocate, NJ resident, mom of 2–one with PKU. Struggling through this #formulashortage for the medically fragile. Tweets are my own.
New Jersey, USA
Joined January 2017
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Today, noon, Russell 188: the Rare Disease Caucus briefing hosted by @EveryLifeOrg. Join me & fellow advocates to hear how your work shapes access to care & treatments for the rare disease community. 🧵 tagging the leaders I’m hoping to see below 👇
@CapitolPolice my kid was in DC yesterday advocating for rare disease & an officer @ Russell gave her a golden coin: Capitol on one side & Capitol police badges on the other. Thank you! It made her day and she loved it. And then she lost it. :-( Possible to get another?
It has been QUITE a year! Thanks to everyone who has supported the launch of @flokhealth and our advocacy efforts for all those with conditions like #PKU. If you can, support our work with a (#matched) gift! #IEM #IMD #medicalnutrition flok.org/takeflight
🎉 Celebrate PKU News' transformation to flok and our community's future with a gift to flok in 2023. All gifts will be matched 💪 Amplify your impact and uplift our community by supporting flok today! flok.org/takeflight 🚀 #takeflight
Had an AMAZING #rarediseaseweek in DC! From the NIH to networking w/ #rareadvocates to meeting my legislators. I'm tired but my heart is full & together we’re making a difference for #medicalnutritionequity & more! Thx to @howmuchphe @EveryLifeOrg @rarediseases @NutritionEquity
Thank you to @SenBooker and @MikieSherrill for your support of of the Medical Nutrition Equity Act— looking forward to your co-sponsorship again in the 118th! While for some #foodismedicine, our medicine is #medicalfood
Today marks the 1-year anniversary of the start of what's been called the #formulashortages but people in my rare-disease community know as the #formulacrisis: a way-too-long thread.
Once this crisis of supply resolves, thousands will still be at risk because of a system that fails to recognize #medicalnutrition for what it is: the proven cost-effective treatment for IEM.
The Medical Nutrition Equity Act must pass to ensure that everyone has access to these treatments to sustain life with an IEM. #EquityRequiresAccess.