Health communications & advocacy @HorizonNews. Chicago fan: Sox Cubs Bulls Hawks @NPUbaseball. Tweets = my own opinions.
Arlington Heights, Illinois
Joined April 2015
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Very excited to welcome four new board members to our Pediatric Epilepsy Surgery Alliance BOD. Different backgrounds, different experiences, different expertise -- aligned with the rest of our board around a very important mission. Read more 👇👇👇👇👇.
Join us in welcoming our newest board members: @a__fallah @TaylorAbelMD @kaitlynaoconnor and Natalie Robinson. We look forward to your stewardship, governance, and guidance as we build capacity to serve our community better.
bit.ly/3G6il9i
Matt Flesch retweeted
Our founder @MonikaJonesJD shares why it's important to understand outcomes after pediatric #epilepsysurgery. Parents need a roadmap of what might happen post-op. Teachers and therapists need guidelines to improve outcomes.
A lot of work to do here.
#epilepsy #seizures
After #epilepsy surgery, some feel left to navigate their new normal without much support or intervention. More comprehensive postoperative rehabilitation programs can help, but those programs are still relatively rare.
Read the #ILAE Epigraph: ilae.org/epigraph/surgery-ma…
ALT Epigraph Volume 25, Issue 4, Fall 2023 After epilepsy surgery: Managing expectations and care By Joy Mazur, Epigraph intern ILAE
Matt Flesch retweeted
📣🔥 NEW study of 81 children with genetic epilepsy w daily seizures in 72%
🗓️#epilepsysurgery 2.2 years after drug resistance
✅ 68% with >50% ⬇️ in seizures post op
✅ 33% = seizure freedom
Epilepsy surgery is not a last resort
🛑stopthedelay.org
🚨New article from the PERC Surgery Database project published in Seizure
Genetic etiology is not an absolute contraindication to #epilepsy surgery! In fact, we found non-lesional genetic etiologies did well - with seizure reduction the goal of treatment!
sciencedirect.com/science/ar…
Matt Flesch retweeted
Amgen has completed its acquisition of Horizon Therapeutics plc.
We welcome the @HorizonNews team and look forward to working together to serve more patients living with rare diseases.
➡️ Press release: amgen.ly/46lQiOs
$AMGN
Matt Flesch retweeted
Join us in congratulating Horizon's Liz Thompson, Ph.D., and Michelle Rivas on being named to the 2023 @PharmaVoice 100 list! Learn more about why they were recognized among the most inspiring people in the life-sciences industry: bit.ly/3Ro0eCx. #PharmaVoice100
Tremendous honor for Horizon to be ranked first in overall corporate reputation among rare disease patient advocacy groups, according to PatientView's global survey. I am lucky to work with such talented/committed advocates every day.
It’s an honor to rank No. 1 in overall corporate reputation among rare disease patient advocacy groups around the world familiar with Horizon in the 2022 @PatientView ‘Corporate Reputation of Pharma’ survey. Read more: bit.ly/3qQicT4. #HorizonInspired
Recipients of Horizon's #RAREis Global Advocate Grant were announced today. The program awards $5,000 one-time grants to 50 rare disease patient advocacy groups. As a company, we learn from patient groups outside of disease states where we have medicines. We learn how... (1/2)
We’re thrilled to announce the 2023 recipients of the #RAREis Global Advocate Grant! This year, we’ve awarded $5K grants to 50 U.S. and global patient advocacy groups working to advance, educate and address challenges faced by rare disease families: bit.ly/47j8gCe.
The @rideATAXIA Chicago did not disappoint. 12 mile ride w/my daughter followed by inspiring talks from @KyleABryant & others, & great food that the @Outback team makes every year at this event. Love this community/event, hope to never stop going, even AFTER they @CureFA_org
I shared my thoughts on rare disease advocacy and using storytelling to elevate rare disease conversations via @PM360online Think Tank section for June. Check it out here...
pm360online.com/working-with…
Matt Flesch retweeted
With the Chicago area home to our U.S. headquarters, we’re thrilled to be recognized on @FortuneMagazine’s Best Workplaces in Chicago list again this year. Learn more: bit.ly/3oXZ593. #HorizonInspired #BestWorkplaces #GPTWcertified
Excellent #RAREis article listing mental health resources available to the rare disease community. Grateful these organizations exist. Please pass it on.
Matt Flesch retweeted
Follow along as Horizon's Mike Smith, Ph.D., takes us on a day in his life at the @EULAR_org Congress in Italy. Mike joined Horizon colleagues to present new data from our clinical trials and learn about the latest research in rheumatology. Learn more: bit.ly/3pPPDVg.
Kristina Davidson, on our patient advocacy team at Horizon, talks about her passion for advocating for people living with uncontrolled gout. So much stigma and misunderstanding. Tremendous progress has been made over the last few years thx to Kristina and many others at Horizon.
We are learning about the Real-World Evidence Accelerator #gout #chronicillness #patientdata #WorldOrphanUSA @trendcommunity
Horizon was ranked #1 overall among patient advocacy groups in the United States. This is a very proud moment for our team! We're all fortunate to be able to do such meaningful work alongside incredible leaders in the patient advocacy community.
We’re humbled to receive a No. 1 ranking in overall corporate reputation among U.S. patient advocacy groups in the latest 2022 @PatientView ‘Corporate Reputation of Pharma’ survey. Learn more: bit.ly/3VNta6R.
Patient advocacy groups ranked Horizon #1 in patient centricity and integrity. Very proud of our patient advocacy team. We're so fortunate to work with incredible patient advocacy organizations around the world as part of our jobs.
We’re honored to be recognized as a top company by rare disease patient groups globally, including a No. 2 ranking in overall corporate reputation, in the latest 2022 @PatientView ‘Corporate Reputation of Pharma’ survey. Learn more: bit.ly/3VnYadw.
Matt Flesch retweeted
Our BOD chair @MattFlesch2 has produced a 🥹documentary about the last season the @whitesox played at Comiskey Park! If you're in #Chicago, don't miss this screening to benefit our programs and research. #Chicago #baseball @_AmericanLeague
🗓 5/14/23
⏱ 11:00 a.m.
🎫 $25
Tickets for our Last Comiskey fundraiser screening with Q&A panel featuring Nancy Faust, Donn Pall, Wayne Edwards, Tom Shaer and TBA others now available here: lastcomiskey.eventbrite.com
IMPORTANT ADVOCACY NEWS: The Horizon #RAREis Global Advocate Grant will award 50 $5K grants in 2023 -- up from 35 in 2022. Very proud of the team at Horizon that orchestrated this program.
Importantly, the application is NOT arduous; here is the link: rareiscommunity.com/rareis-g…
Very compelling article about gout, a tragically underappreciated disease.
"As an industry and a society, we must take #gout more seriously. That effort begins with the physicians who diagnose and treat it," Brian LaMoreaux, MD, MS, of Horizon Therapeutics, emphasized.
ow.ly/6HXw50MM5zI