Alport syndrome patient, parent, and advocate. Executive Director of Alport Syndrome Foundation. Big belief: Fear No Art!
Joined April 2020
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Thx to Dr. Michelle Rheault reminding the nephrology world about women with X-linked kidney diseases at ISN World Congress in Buenos Aires!
ALT Dr. Michelle Rheault ISN World Congress in Buenos Aires
Lisa Bonebrake retweeted
"The focus on pediatric KRT is valuable. However, one of the most important considerations for initiating treatment is extremely individual: the patient's goals." In this Patient Voice article, @LisaBonebrake comments on a recent study bit.ly/CJASN0224
@AlportSyndFndn
Lisa Bonebrake retweeted
We are pleased to share initial results of our phase 2 study in #AlportSyndrome. View the press release here: investors.eloxxpharma.com/ne…
Lisa Bonebrake retweeted
“…we and Kyowa Kirin have decided to discontinue our bardoxolone chronic kidney disease programs.”
- @ReataPharma
ASF would like to thank all patients and principal investigators who participated in the first-ever #Alportsyndrome clinical trial.
This Post is from an account that no longer exists. Learn more
Lisa Bonebrake retweeted
ASF Volunteer Research Program Chair and Board of Directors member, B. André Weinstock, PhD, MSAS, provided an overview of #Alportsyndrome as part of yesterday’s “Glomerular Disease: Novel Approach to Diagnosis, Prognostication, and Management” course. #NKFClinicals
22-year old shares the positive, life-affirming choice of living kidney donation for brother with Alport syndrome, along with advice for others considering donation. #DonateLifeMonth
In honor of #DonateLifeMonth, we are pleased to share a new, closed-captioned video interview with a living kidney donor. Mack, who is unaffected by #Alportsyndrome, gave the Gift of Life to his affected brother in December 2021. youtu.be/QLLFAiTlwb0
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Thank you, @kargerpublisher, for the opportunity to share my story about living with #Alportsyndrome. Patient perspective is valuable! karger.com/Article/Pdf/52943…
Lisa Bonebrake retweeted
Eloxx Pharmaceuticals Announces First Patients Enrolled in Phase 2 Clinical Study Evaluating ELX-02 for the Treatment of #AlportSyndrome. Learn more in today's press release: investors.eloxxpharma.com/ne…
The #Alportsyndrome Research Roadmap begins with patients! Learn about the current state of Alport research in ASF's new closed-captioned video: youtu.be/QJX-vVESDNI
Lisa Bonebrake retweeted
We are grateful to all the Alport Connect 2022 sponsors for allowing us to educate and interact with so many members of the larger #Alportsyndrome community! All attendees are encouraged to complete their event evaluations to help us improve future events.
Lisa Bonebrake retweeted
New clinical trial for patients with #Alport syndrome and nonsense mutations! ELX-02 is a eukaryotic ribosomal selective glycoside being developed for the treatment of genetic diseases caused by nonsense mutations. @AlportSyndFndn clinicaltrials.gov/ct2/show/…
Lisa Bonebrake retweeted
Having a trusted support network in place is important, regardless of your age or level of kidney disease progression. Join us for an hour-long discussion next week. Free pre-registration is required: us06web.zoom.us/meeting/regi…
Lisa Bonebrake retweeted
Next Tuesday, June 7th, at 4pm Pacific/7pm Eastern, ASF staff & members of the Emerging Leadership Council will host a 60-minute virtual discussion about #Alportsyndrome medications! Share your experiences & learn from others. Register: us06web.zoom.us/meeting/regi… 💊
Lisa Bonebrake retweeted
A @JacksonLab research team led by Ron Korstanje, PhD has received a $1.49M grant from @NIDDKgov to study #AlportSyndrome genetics. Read more about the research grant here: bit.ly/3IP493i @AlportSyndFndn
Lisa Bonebrake retweeted
Did you know that #AlportSyndrome is a rare genetic condition characterized by kidney disease, hearing loss and eye abnormalities? Learn more about this condition and our rationale for studying ELX-02 as a potential treatment option: eloxxstg.wpengine.com/wp-con…
#RareDisease
Lisa Bonebrake retweeted
Today, @nkf launched the national registry for patients with #Alportsyndrome, the NKF Patient Network – Alport Syndrome. This powerful tool will collect patient data to better inform research, clinical care, drug development, and more. Learn more at bit.ly/3vr9N8N.
Lisa Bonebrake retweeted
TODAY is #RareDiseaseDay! 💙💚💜
All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease.
As a global community, we have a powerful voice! 📣
How are you sharing your colours today? 👇👇👇
Lisa Bonebrake retweeted
Today, the U.S. Food and Drug Administration (FDA) announced its decision not to approve a New Drug Application for the use of bardoxolone methyl as a treatment for #Alportsyndrome. ASF has issued a press release and video addressing today's decision: alportsyndrome.org/re-fda-de…
Lisa Bonebrake retweeted
Earlier today, @ReataPharma provided a written statement to ASF and the larger community of #Alportsyndrome patients and families regarding the EAGLE Study: alportsyndrome.org/wp-conten…
