From 27c31b0bd18c5a95de59547b26a5aea1899aed1a Mon Sep 17 00:00:00 2001
From: Kaya <kaya.lange@uni-bielefeld.de>
Date: Wed, 25 Sep 2024 20:52:39 +0200
Subject: [PATCH] changes timeline
---
src/data/hptimelinedata.tsx | 9 +++++----
1 file changed, 5 insertions(+), 4 deletions(-)
diff --git a/src/data/hptimelinedata.tsx b/src/data/hptimelinedata.tsx
index 35520f7e..4e96d510 100644
--- a/src/data/hptimelinedata.tsx
+++ b/src/data/hptimelinedata.tsx
@@ -531,11 +531,12 @@ export const timelinedata: Array<TimelineDatenpunkt> = [
interviewtabid: "joshua",
cardtext: "",
language: "en",
- quote: "",
- aimofcontact: "",
- insights: "",
- implementation: "",
+ quote: "We’ve had to sit by and watch people die, knowing that better treatment exists but is inaccessible. ",
+ aimofcontact: "We contacted the organization CF vests worldwide [Link] with the aim to hear more diverse perspectives beyond Germany. After the founder Rod connected us with Joshua, Joshua was so kind to conduct an interview with us not only about the perspectives and stories he heard but also about his personal experiences with his daughter and living in a country where CF care is very hard to get. Joshua (from the USA) and his family live in Thailand where he and his wife run a children’s home. Their daughter is the only child with CF.",
+ insights: "Joshua showed us just how dire the situation is for CF patients is in some regions. It was shocking to hear there is only one doctor knowledgeable about CF in Thailand and that many doctors dismiss the possibility of CF due to racial bias and misinformation. Additionally, we confirmed how much the accessibility of care depends on the healthcare system, as we already touched on during the interview with Nicole Friedlein [link]. On the parenting level, Joshua brought in many perspectives contrary to what we previously heard. In the interview with Max [Link], we learned he vehemently avoids ponding water while Joshua’s daughter is allowed to roam around with no such restrictions. Neither have chronic infections. ",
+ implementation: "The interview with Josh made us realize we too needed to look at the reason why we chose F508del. Did we, too, fall for bias? Despite a change of target not being feasible anymore, we looked into it and traced back our steps that led to our decision. We did not find as much information about other mutations when first researching cystic fibrosis, especially in the context of prime editing. Mattijs Bulceans's paper on targeting the mutations L227R and N1303K [1] was one of few papers. After explicitly searching for cystic fibrosis records for specific countries and regions, we uncovered a moderate number of papers examining CF in Asia and other regions we previously did not know much about. The very first article supported Joshua's hypotheses and painted a sad picture: Among other things, it describes the case of a four-month-old boy who was diagnosed with cystic fibrosis. Nothing unusual in itself, but the circumstances are depressing. Two of the three siblings born before him died within months of birth and had previously presented with symptoms of cystic fibrosis. He was the first to be diagnosed. A sweat test aimed at cystic fibrosis was not available at the hospital, so one was improvised. Later on, a genetic test revealed the presence of 508del. [2] We found ourselves and our lack of knowledge in good company as we found papers as new as from 2020 (14 years after the previously mentioned paper) containing statements such as “recent reports suggest that CF does occur in Asia†[3]. Fortunately, there is a rising number of cystic fibrosis experts for Asia and other previously overlooked regions such as Africa. [4] We chose to not only look at the scientific data but also into anecdotal evidence. To find the latter, we searched official and private websites and chatrooms for information and experiences of patients. In the end, we found narratives from most ethnic backgrounds about being dismissed and often misdiagnosed. Of course, this is not an occurrence unique to cystic fibrosis. Our conclusion is that yes, we did fall for bias. But regardless of ethnicity, 508del occurs and is overall the most prevalent mutation as was confirmed in our interview with CF expert Sriram .... This experience was uncomfortable as we felt the pressure to be thorough and deliver a perfect project. What would have been more devastating than realizing we made a wrong choice at the very core? We made the conscious decision to invest our resources into figuring out if we indeed made a mistake and we want to encourage other teams to do the same. iGem stands for innovation – but also for growth. Especially in the context of Integrated Human Practices, it is important to examine both the positive and the negative to create a project with a future. ",
pictureurl_interview: ""
+ <ButtonOne text="Donate for CFvww" open="https://donorbox.org/donatecfvww" />
},
{
title: "Prof. Dr.",
--
GitLab