diff --git a/code/bibtex.bib b/code/bibtex.bib
index a7087a320f149e707791a9a6b645702be1e43777..9ff8d535685451e7c2a7e60151a59d143b1a2f09 100644
--- a/code/bibtex.bib
+++ b/code/bibtex.bib
@@ -1,7 +1,25 @@
-@book{Chadwick_2012, address={London}, edition={2nd ed}, title={Encyclopedia of applied ethics}, ISBN={978-0-12-373932-2}, publisher={Academic Press}, author={Chadwick, Ruth F.}, year={2012}, language={eng} }
+@article{
-@article{Rubeis_Steger_2018, title={Risks and benefits of human germline genome editing: An ethical analysis}, volume={10}, ISSN={1793-8759, 1793-9453}, DOI={10.1007/s41649-018-0056-x}, number={2}, journal={Asian Bioethics Review}, author={Rubeis, Giovanni and Steger, Florian}, year={2018}, month=jul, pages={133–141}, language={en} }
+doi:10.1073/pnas.1213273110,
-@article{Ansah_2022, title={Ethical Challenges and Controversies in the Practice and Advancement of Gene Therapy}, volume={2022}, rights={https://creativecommons.org/licenses/by/4.0/}, ISSN={2573-8461}, DOI={10.1155/2022/1015996}, abstractNote={One of the most important technologies in modern medicine is gene therapy, which allows therapeutic genes to be introduced into cells of the body. The approach involves genetics and recombinant DNA techniques that allow manipulating vectors for delivery of exogenous material to target cells. The efficacy and safety of the delivery system are a key step towards the success of gene therapy. Somatic cell gene therapy is the easiest in terms of technology and the least problematic in terms of ethics. Although genetic manipulation of germline cells at the gene level has the potential to permanently eradicate certain hereditary disorders, major ethical issues such as eugenics, enhancement, mosaicism, and the transmission of undesirable traits or side effects to patients’ descendants currently stymie its development, leaving only somatic gene therapy in the works. However, moral, social, and ethical arguments do not imply that germline gene therapy should be banned forever. This review discusses in detail the current challenges surrounding the practice of gene therapy, focusing on the moral arguments and scientific claims that affect the advancement of the technology. The review also suggests precautionary principles as a means to navigate ethical uncertainties.}, journal={Advances in Cell and Gene Therapy}, author={Ansah, Emmanuel Owusu}, editor={Miao, Carol H.}, year={2022}, month=aug, pages={1–5}, language={en} }
+author = {Baruch Fischhoff },
-@book{Pugh_2020, edition={1}, title={Autonomy, Rationality, and Contemporary Bioethics}, rights={https://creativecommons.org/licenses/by-nc-nd/4.0/}, ISBN={978-0-19-885858-4}, url={https://academic.oup.com/book/33778}, DOI={10.1093/oso/9780198858584.001.0001}, abstractNote={Abstract Personal autonomy is often lauded as a key value in contemporary Western bioethics, and the claim that there is an important relationship between autonomy and rationality is often treated as an uncontroversial claim in this sphere. Yet, there is also considerable disagreement about how we should cash out the relationship between rationality and autonomy. In particular, it is unclear whether a rationalist view of autonomy can be compatible with legal judgments that enshrine a patient’s right to refuse medical treatment, regardless of whether ‘… the reasons for making the choice are rational, irrational, unknown or even non-existent’. This book brings recent philosophical work on the nature of rationality to bear on the question of how we should understand autonomy in contemporary bioethics. In doing so, the author develops a new framework for thinking about the concept, one that is grounded in an understanding of the different roles that rational beliefs and rational desires have to play in personal autonomy. Furthermore, the account outlined here allows for a deeper understanding of different forms of controlling influence, and the relationship between our freedom to act, and our capacity to decide autonomously. The author contrasts his rationalist account with other prominent accounts of autonomy in bioethics, and outlines the revisionary implications it has for various practical questions in bioethics in which autonomy is a salient concern, including questions about the nature of informed consent and decision-making capacity.}, publisher={Oxford University PressOxford}, author={Pugh, Jonathan}, year={2020}, month=apr, language={en} }
\ No newline at end of file
+title = {The sciences of science communication},
+
+journal = {Proceedings of the National Academy of Sciences},
+
+volume = {110},
+
+number = {supplement\_3},
+
+pages = {14033-14039},
+
+year = {2013},
+
+doi = {10.1073/pnas.1213273110},
+
+URL = {https://www.pnas.org/doi/abs/10.1073/pnas.1213273110},
+
+eprint = {https://www.pnas.org/doi/pdf/10.1073/pnas.1213273110},
+
+abstract = {The May 2012 Sackler Colloquium on “The Science of Science Communication†brought together scientists with research to communicate and scientists whose research could facilitate that communication. The latter include decision scientists who can identify the scientific results that an audience needs to know, from among all of the scientific results that it would be nice to know; behavioral scientists who can design ways to convey those results and then evaluate the success of those attempts; and social scientists who can create the channels needed for trustworthy communications. This overview offers an introduction to these communication sciences and their roles in science-based communication programs.}}
\ No newline at end of file
diff --git a/code/output.txt b/code/output.txt
index ee875d2b0b5a614a689188d826c2d885414e4885..e8c7c81aa25e43ec947afbe60af3e7fd799c5ba5 100644
--- a/code/output.txt
+++ b/code/output.txt
@@ -1,47 +1,13 @@
{/*<!-- Citation num 1--> */}
-<li typeof="schema:WebPage" role="doc-biblioentry" property="schema:citation" id="desc-1">
- <span property="schema:author" typeof="schema:Organisation">
- <span property="schema:Name">Chadwick, Ruth F.</span>.
- </span>
- <span property="schema:name">Encyclopedia of applied ethics.</span>
- <i property="schema:publisher" typeof="schema:Organization">Academic Press</i>
- (<time property="schema:datePublished" datatype="xsd:gYear" datetime="2012">2012</time>).
-</li>
-
-{/*<!-- Citation num 2--> */}
-<li typeof="schema:ScolarlyArticle" role="doc-biblioentry" property="schema:citation" id="desc-2">
+<li typeof="schema:ScolarlyArticle" role="doc-biblioentry" property="schema:citation" id="desc-1">
<span property="schema:author" typeof="schema:Person">
- <span property="schema:Name"> Rubeis, G.</span>;
- <span property="schema:Name"> Steger, F.</span>
- </span>
- <span property="schema:name"> Risks and benefits of human germline genome editing: An ethical analysis. </span>
- <i property="schema:publisher" typeof="schema:Organization"> Asian Bioethics Review</i>
- <b property="issueNumber" typeof="PublicationIssue"> 10</b>,
- <span property="schema:pageBegin">133–141</span>
- (<time property="schema:datePublished" datatype="xsd:gYear" dateTime=" 2018">2018</time>).
- <a className="doi" href="https://doi.org/10.1007/s41649-018-0056-x"> doi: 10.1007/s41649-018-0056-x</a>
-</li>
-
-{/*<!-- Citation num 3--> */}
-<li typeof="schema:ScolarlyArticle" role="doc-biblioentry" property="schema:citation" id="desc-3">
- <span property="schema:author" typeof="schema:Person">
- <span property="schema:Name"> Ansah, E.</span>
- </span>
- <span property="schema:name"> Ethical Challenges and Controversies in the Practice and Advancement of Gene Therapy. </span>
- <i property="schema:publisher" typeof="schema:Organization"> Advances in Cell and Gene Therapy</i>
- <b property="issueNumber" typeof="PublicationIssue"> 2022</b>,
- <span property="schema:pageBegin">1–5</span>
- (<time property="schema:datePublished" datatype="xsd:gYear" dateTime=" 2022">2022</time>).
- <a className="doi" href="https://doi.org/10.1155/2022/1015996"> doi: 10.1155/2022/1015996</a>
-</li>
-
-{/*<!-- Citation num 4--> */}
-<li typeof="schema:WebPage" role="doc-biblioentry" property="schema:citation" id="desc-4">
- <span property="schema:author" typeof="schema:Organisation">
- <span property="schema:Name">Pugh, Jonathan</span>.
- </span>
- <span property="schema:name">Autonomy, Rationality, and Contemporary Bioethics.</span>
- <i property="schema:publisher" typeof="schema:Organization">Oxford University PressOxford</i>
- (<time property="schema:datePublished" datatype="xsd:gYear" datetime="2020">2020</time>).
+ <span property="schema:Name"> Fischhoff, B.</span>
+ </span>
+ <span property="schema:name"> The sciences of science communication. </span>
+ <i property="schema:publisher" typeof="schema:Organization"> Proceedings of the National Academy of Sciences</i>
+ <b property="issueNumber" typeof="PublicationIssue"> 110</b>,
+ <span property="schema:pageBegin"> 14033</span>-<span property="schema:pageEnd">14039</span>
+ (<time property="schema:datePublished" datatype="xsd:gYear" dateTime=" 2013">2013</time>).
+ <a className="doi" href="https://doi.org/10.1073/pnas.1213273110"> doi: 10.1073/pnas.1213273110</a>
</li>
diff --git a/src/components/BFH-Timeline.tsx b/src/components/BFH-Timeline.tsx
index 610a913f934ba6b0899624aeb98abef875d75a0d..8624342a0488aee775c15ae87d9bebead8da4ba8 100644
--- a/src/components/BFH-Timeline.tsx
+++ b/src/components/BFH-Timeline.tsx
@@ -1,5 +1,6 @@
import { PanelTimelineItem, TimelineItem, TimelineItemPic, TimelineItemTwoPic } from "./VerticalTimeline";
import SimpleSlider from "./Slider";
+import { SupScrollLink } from "./ScrollLink";
export function BFHTimeline () {
return(
@@ -55,8 +56,36 @@ export function BFHTimeline () {
"
heading="placeholder"
>
+
<div id="synworkshop" style={{display: "none"}}>
- So much more
+ <h6>Setting</h6>
+ <p>
+ The kernel workshop was given by Traci Haddock, Director of Community at <a href="https://www.asimov.com/">ASIMOV Boston</a>. She introduced the Kernel software and showed us how to
+ implement AI-based tools in our synthetic biology project. The program can be used to graphically display plasmids. By uploading parts in an
+ iGEM-related database, safety considerations and registry entries can be checked automatically.
+ </p>
+ <div className="row">
+ <div className="col">
+ <img src="https://static.igem.wiki/teams/5247/photos/meetup/tracy-at-kernel-seminar/kernel-1.webp"/>
+ </div>
+ <div className="col">
+ <img src="https://static.igem.wiki/teams/5247/photos/meetup/tracy-at-kernel-seminar/kernel-2.webp"/>
+ </div>
+ <p><b>Tracy explains the “marshmallow madness†to us. </b></p>
+ </div>
+ <h6>What did we learn?</h6>
+ <p>
+ We learned the basics of kernels in order to design plasmids by understanding general plasmid construction and problem solving through different
+ cloning strategies. </p>
+ <p>
+ Furthermore, Kernel has an AI-assisted search function that can be used for plasmid representation, e.g. to find a specific
+ promoter based on certain requirements. Traci showed us practical exercises for firsthand application. First, we were asked to
+ recreate a plasmid followed by a slightly trickier task: We should clean the world of major marshmallow contamination by developing
+ a plasmid. In small groups we discussed which components the plasmid needed. Tracy gave us some information with which we quickly
+ identified crucial components of the plasmid and then designed it.
+ </p>
+ <p>In the end, each group presented their solution. The funniest and most creative approaches were celebrated. </p>
+
</div>
</TimelineItemPic>
<TimelineItemTwoPic
@@ -86,11 +115,16 @@ export function BFHTimeline () {
csstag="talktwo"
vorname="Karla"
nachname="Wagner"
- heading="placeholder"
- text="Lorem ipsum dolor sit amet, consetetur sadipscing elitr, sed diam nonumy eirmod tempor invidunt ut labore et dolore magna aliquyam erat, sed diam voluptua. At vero eos et accusam et"
- >
+ heading="Optimization of a DKR of a Tertiary Alcohol through Protein Engineering"
+ text=""
+ >
<div id="talktwo" style={{display: "none"}}>
- So much more
+ <p>
+ Karla Wagner, a PhD researcher at the <b>IOCB of the University of Bielefeld</b> with a background in organic chemistry and biotechnology. During the workshop, Karla discussed her research on optimizing the dynamic kinetic resolution (DKR) of tertiary alcohols using protein engineering. Her work focuses on sustainable chemistry practices, particularly by using enzymes in biocatalysis, aligning with the principles of sustainable chemistry.
+ </p>
+ <p>
+ Her presentation centered around her research on the synthesis of chiral tertiary alcohols, which are valuable in the production of pharmaceuticals, fragrances, and flavouring agents. She emphasized the importance of chirality in pharmaceuticals, noting how different enantiomers of a molecule can have drastically different effects, such as the case of Thalidomide.
+ </p>
</div>
</TimelineItemPic>
<TimelineItem
@@ -161,24 +195,33 @@ export function BFHTimeline () {
text="Novel technologies opened possibilities and risks. Learn how you implement Safety and Security Strategies within your project and think more responsible in terms of Dual Use."
>
<div id="safeworkshop" style={{display: "none"}}>
- <p>The biosafety workshop was held by Svenja Vinke. Svenja is a postdoctoral researcher specializing in
- synthetic biology at the Church Lab, Harvard Medical School, and serves on the Safety and Security
- Committee of iGEM. She started by outlining the key concepts of biosafety and biosecurity and emphasized
- how important laboratory safety is first and foremost. </p>
+ <p>
+ The biosafety workshop was held by Svenja Vinke. As a postdoctoral researcher specializing in synthetic biology at the Church Lab, Harvard Medical School. Svenja works on the iGEM Safety and Security Committee. Additionally, she was part of the Biosafety and Security Award Team of Bielefeld University in 2016.
+ </p>
+ <p>
+ First and foremost, she started the workshop by outlining the key concepts of biosafety and biosecurity, emphasizing how important laboratory safety is.
+ </p>
+ <div className="row">
+ <div className="col">
+ <img src="https://static.igem.wiki/teams/5247/photos/meetup/s-s-workshop/biosafety-seminar-bfh.webp"/>
+ </div>
+ <div className="col">
+ <img src="https://static.igem.wiki/teams/5247/photos/meetup/s-s-workshop/teil-2-bfh-biosafety.webp"/>
+ </div>
+ </div>
+ <br/>
<p>She also explained which safety aspects we should consider for our project: </p>
<ul>
- <li> possible misuse (dual use) </li>
- <li> built-in safety levels </li>
- <li> if possible, several built in security mechanisms or at least recognizable that safety strategies that have been worked </li>
+ <li> <b>Dual use:</b> Refers to technology or research that can be used for both beneficial and harmful purposes. For example, AI designed for medical diagnosis could also be misused for harmful surveillance. Managing dual-use risks involves careful consideration of both the positive applications and the potential for misuse. </li>
+ <li> <b>Built-In Safety Levels:</b> This concept involves designing systems with multiple layers of safety to prevent failure or minimize harm. In technology and engineering, built-in safety levels ensure that even if one layer fails, others remain intact to maintain safe operation. </li>
+ <li> <b>Safe-by-Design: </b> Safe-by-Design emphasizes integrating safety considerations into the earliest stages of product or system development. By anticipating risks and hazards from the start, this approach proactively minimizes dangers before they become issues, leading to safer outcomes. </li>
</ul>
- <p>This particularly applies to any delivery systems that can address their target particularly efficiently,
- as these systems could be the center of potential misuse. </p>
- <p>Finally, each team gave brief presentations of their projects and engaged in a group discussion on potential
- security risks and general security considerations. Together, we brainstormed and identified specific
- aspects of each project that could present potential risks. </p>
- <p>From Svenja’s seminar, we learned which safety-relevant aspects are particularly important, as well as
- the importance of examining a project from different perspectives to identify and minimize potential
- risks related to lab work and the environment. </p>
+ <p>
+ Finally, each team gave brief presentations of their projects and engaged in a group discussion on potential security risks and general security considerations. Together, we brainstormed and identified specific aspects of each project that could present potential risks.
+ </p>
+ <p>
+ From Svenja’s seminar, we learned which safety-relevant aspects are particularly important, as well as the importance of examining a project from different perspectives to identify and minimize potential risks related to lab work and the environment.
+ </p>
</div>
</TimelineItemPic>
<TimelineItemTwoPic
@@ -195,16 +238,21 @@ export function BFHTimeline () {
text="Experience how science communication could be. Learn creative and funny ways to communicate difficult topics. Think outside the box and train your skills. "
>
<br></br>
-
<div id="commworkshop" style={{display: "none"}}>
<br></br>
<h6>Setting</h6>
<p>
- This workshop was offered to us by <a href="https://www.stud-scicom.de/">StudSciCom</a>.
- StudSciCom is an initiative for science communication by students for students in Germany.
- They held this workshop for us for the very first time and we are glad that we were able to offer the
- uprising StudSciCom team a platform to try out this kind of outreach. In addition, we were able to gain
- knowledge about proper science communication – a clear win-win situation for all of us!
+ This workshop was offered to us by StudSciCom as part of the BFH Meet-up program at Bielefeld University.
+ <a href="https://www.stud-scicom.de/"> StudSciCom</a> is an initiative for science communication by students for students in Germany.
+ They held this workshop for us for the very
+ first time and we are glad that we were able to offer the uprising StudSciCom team a platform to try out this kind of outreach. In addition,
+ we were able to gain knowledge about proper science communication – a clear win-win situation for all of us!
+ </p>
+ <p>
+ Science communication is defined as the practice of informing, educating, and raising awareness about science-related topics among the general public
+ or specific audiences. It involves various methods such as writing articles, giving presentations, using social media, and engaging in public discussions
+ to make scientific knowledge accessible and understandable<SupScrollLink label="1"/>.
+
</p>
<h6>What did we learn?</h6>
<p>
@@ -226,6 +274,21 @@ export function BFHTimeline () {
presented later onto the public at “Der Teuto ruft!†[Link], an event in Bielefeld to connect the local
population with regional companies and institutes to inform them about their work - including our iGEM team!
</p>
+ <h6>References</h6>
+ <ol>
+ {/*<!-- Citation num 1--> */}
+ <li typeof="schema:ScolarlyArticle" role="doc-biblioentry" property="schema:citation" id="desc-1">
+ <span property="schema:author" typeof="schema:Person">
+ <span property="schema:Name"> Fischhoff, B.</span>
+ </span>
+ <span property="schema:name"> The sciences of science communication. </span>
+ <i property="schema:publisher" typeof="schema:Organization"> Proceedings of the National Academy of Sciences</i>
+ <b property="issueNumber" typeof="PublicationIssue"> 110</b>,
+ <span property="schema:pageBegin"> 14033</span>-<span property="schema:pageEnd">14039</span>
+ (<time property="schema:datePublished" datatype="xsd:gYear" dateTime=" 2013">2013</time>).
+ <a className="doi" href="https://doi.org/10.1073/pnas.1213273110"> doi: 10.1073/pnas.1213273110</a>
+ </li>
+ </ol>
</div>
</TimelineItemTwoPic>
<TimelineItemPic
@@ -310,11 +373,33 @@ export function BFHTimeline () {
csstag="tedtalk2"
vorname="Merel"
nachname="van der Bosch"
- heading="placeholder"
- text="Lorem ipsum dolor sit amet, consetetur sadipscing elitr, sed diam nonumy eirmod tempor invidunt ut labore et dolore magna aliquyam erat, sed diam voluptua. At vero eos et accusam et"
- >
+ heading="How to Create the Perfect Part Characterization"
+ text=""
+ >
<div id="tedtalk2" style={{display: "none"}}>
- So much more
+ <p>Merel provided us with strategies based on her cELPro project at TU Eindhoven on how to approach winning the special awards
+ for Composite Part and New Basic Part. Her team won the <a href="https://2023.igem.wiki/tu-eindhoven/awards">Composite Part Prize and the Therapeutic Prize</a> at the 2023 iGEM
+ competition.
+ </p>
+ <p>
+ After presenting her team's project, Merel inspired us with ways we could also achieve this award. We learned different considerations to make, when it comes to part characterization:
+ </p>
+ <ul>
+ <li>How to emphasize the innovativeness of the project</li>
+ <li>How to highlight the parts potential benefits </li>
+ <li>How to discuss whether these parts could be applied to other projects</li>
+ </ul>
+ <p>
+ Many projects fail because the experiments conducted are too complex. Therefore, Merel encouraged us to initially carry out simpler experiments for our projects, like pH sensitivity and temperature response. Opening the mindset for other maybe more pragmatic experiments could change the focus of the project and drive the engineering cycle.
+ </p>
+ <img src="https://static.igem.wiki/teams/5247/photos/meetup/ted-talk-cp/ted-talk-cp.webp"/>
+ <br/>
+ <p>
+ Additionally, she showed us what a perfect submission for New Basic Part or Composite Part looks like. The Best Part Registry demonstrates great significance and should be filled with different results and representative analyses to characterize the parts. Conducting experiments for characterization and good documentation are just two aspects. The most crucial part is the demonstration of the part’s functions as intended.
+ </p>
+ <p>
+ We learned what effective strategies for the special awards Composite Part and New Basic Part might look like, and were provided with many helpful tips and tricks on how simple experiments for characterization could be designed.
+ </p>
</div>
</TimelineItemPic>
<TimelineItemPic
diff --git a/src/data/hptimelinedata.tsx b/src/data/hptimelinedata.tsx
index 8446531f816d13ddb475bce39641a0fdd50e7a8e..e2e10fd0b10ef162f90dedc707dd84a275626e33 100644
--- a/src/data/hptimelinedata.tsx
+++ b/src/data/hptimelinedata.tsx
@@ -1,3 +1,4 @@
+import { QaBox } from "../components/Boxes";
import { ScrollLinkWithChild } from "../components/ScrollLink";
export interface TimelineDatenpunkt {
@@ -135,8 +136,10 @@ export const timelinedata: Array<TimelineDatenpunkt> = [
heading: "Gathering valuable insights from the patient’s perspective",
interviewtabid: "maxfirst",
cardtext: "",
+ quoteNachname: "Mundt",
+ quoteVorname: "Philip",
language: "de",
- quote: "",
+ quote: "The statement that left the biggest impression for me was when Max was telling about a friend of his and fellow cystic fibrosis patient who caught a fungi infection which he now cannot get rid of anymore, showing how fast a seemingly little infection can change the life of a cystic fibrosis patient for the worse without any kind of warning.",
aimofcontact: [<p>When cystic fibrosis came up as a possible topic, we reached out to a teammate's friend Max in the hopes of getting insights into the needs of CF patients and current treatments to verify the need for further treatment options.
Since he was much more enthusiastic and open for discussion than we dared to hope, we extended our exchanges into the realms of the reality of life for CF patients, possible progressions, organizations and doctors in our area and his personal perspectives and values.
The interest in meeting him grew in the whole team and we invited him to one of our meetings. </p>],
@@ -167,6 +170,47 @@ export const timelinedata: Array<TimelineDatenpunkt> = [
Would it be thrilling to create or benefit patients? </p>
<p>Due to this, Max had a profound influence on our project from the beginning and is the main reason why we chose Integrated Human Practices and Safety & Security as our special prizes. Only after this discussion did we decide on targeting the lung instead of the pancreas and discarded the idea of a diagnostic approach. He did not only give us important information but most importantly personal investment into our project. </p></>],
pictureurl_implementation: "",
+ interview:<><QaBox q="How and when were you first diagnosed? " a="When I was about one year old. My mother did not do any screenings or prenatal testing. I was in pain but as an infant you cannot say that, so I screamed a lot. Many doctors shrug that off in small children but after some time a sweat test was done at the children's clinic."/>
+ <QaBox q="What do you think about diagnosing via sweat tests?" a="I am a clear opponent of diagnosing via sweat tests, especially if it is used to rule out CF and people have atypical CF, because of which they do not get diagnosed because of that."/>
+ <QaBox q="What symptoms do you have?" a="Before taking modulators, I was underweight and did not feel hunger. I also had no sense of taste. Now, I have a healthy weight and still have respiratory symptoms such as very sticky mucus and digestive issues."/>
+ <QaBox q="You are taking individual meds, correct? They are individual in respect to the mutation, not the person, right?" a="Yes, and yes, I am. "/>
+ <QaBox q="What other medications are you taking? " a="Nasal spray, pancreatic enzymes, saline solution for inhalation and pantoprazole, used to reduce stomach acid production. "/>
+ <QaBox q="Do you know how exactly they work?" a="Yes, I wrote a report on that during school. In the children's clinic they explained it like this: The CFTR channel is like a door and people with CF don’t have that many doors and some of the doors are broken. The medication makes more doors that function."/>
+ <QaBox q="What changed when you started taking the modulators? " a="Everything. Most of symptoms are minor now and I have a better lung function and quality of life. I even grew taller."/>
+ <QaBox q="Did you formerly take other medication?" a="I don’t remember anything like that, but I also always had good medical care. "/>
+ <QaBox q="Do you experience any side effects from your medications?" a="At first yes, a lot. Stomach cramps and difficulty breathing for example."/>
+ <QaBox q="Is diabetes a concern of yours?" a="Yes, it is common. I have to go to a diabetes checkup once a year. That happens together with all the other checkups like sonographies."/>
+ <QaBox q="Do you know fellow patients that took part in clinical study for gene therapy or at least thought about doing so?" a="I know no one that took part in one but definitely people who would like to do so."/>
+ <QaBox q="Do you know other patients that would want to use gene therapy?" a="Yes, most definitely."/>
+ <QaBox q="Since your sweat is different, do you have trouble with your temperature regulation?" a="No and I do not know any patients with an issue like that. But it still is uncomfortable in the summer, because the sweat is thick, and it can smell stronger, too."/>
+ <QaBox q="How many hours a day are devoted to your illness?" a="Good question, but wrong patient. I am blessed with good health while other people my age may have to be on a ventilator. I currently only have to inhale for 20 minutes every day, take my medication and be conscious about hygiene. I would say 30 minutes a day. "/>
+ <QaBox q="That means you do not have many limitations due to CF, is that right?" a="Yes. There are many things I am concerned about but often there is not a different way."/>
+ <QaBox q="What are some of the limitations you do have?" a="Of course, I am still concerned about my health and using public bathrooms for example. And I still do not go swimming in lakes and things like that. But all in all, I feel like I can live a very normal life. "/>
+ <QaBox q="One concern is hygiene. Our university for example does not have toilet seats in most bathrooms. Do you think there should be?" a="That does not concern healthy people, who are the majority. But specifically for CF-people? No, there are too few at the university. It would be more hygienic overall, though. A “CF-toilet†would be nice as a form of a disabled bathroom."/>
+ <QaBox q="How was your childhood as a sick child and how did your parents act with you? " a="My mother is active in the Muko e.V. and has been for some time. My parents always lead by example about what to do and not to do and dealt with it in a good way. My mother was always very committed and involved in giving me good care. I always knew about my illness but felt it was not that bad, because I received good care and education about my illness."/>
+ <QaBox q="What is a typical age for a diagnosis in your experience?" a="Somewhere between the pregnancy and one year. It is obvious if the children do not gain weight and there are genetic screenings one can do prenatally or after birth. "/>
+ <QaBox q="If a diagnosis is possible during pregnancy, do you know of any treatments during pregnancy?" a="No, I think the youngest age for modulators is 3 years. But people can do genetic testing and counselling before pregnancy."/>
+ <QaBox q="What does a high-fat diet entail?" a="For me, it was a lot of oil and butter and high-calory drinks. "/>
+ <QaBox q="What would happen if you stopped taking your medications?" a="The first thing to happen would be heavy and dry coughing, because the mucus would not be removed properly anymore. Thus, bacteria would not be properly removed from the lungs anymore either and an infection would become more likely. And I would not be able to really process food anymore, so no nutrients, feeling weak and stomach problems. "/>
+ <QaBox q="Physical therapy is a part of your treatment – what exactly do you do there? " a="Breathing exercises and training my lung volume to keep it on the same level. "/>
+ <QaBox q="Do you have further wished for your therapy?" a="Not really. I am very lucky and am free of heavy symptoms on most days. "/>
+ <QaBox q="Is that the norm or do you know people who do want new therapies?" a="No, there is a need for new therapies. "/>
+ <QaBox q="Are these people with different mutations or worse health? " a="I don’t know, the progression is so individual, and infections can create big changes. "/>
+ <QaBox q="A therapy for which organ would benefit most people that have worse health than you do?" a="Probably the lung. The pancreas is important too, but stomach problems are usually less pressing than difficulty in breathing."/>
+ <QaBox q="You mentioned that doing sport is difficult with CF, why?" a="Hygiene. In the lockers and the showers but also with the equipment."/>
+ <QaBox q="Do you feel restricted in your free time activities?" a="No, I always had good alternatives. For example, going swimming at an open-air swimming pool instead of a lake. "/>
+ <QaBox q="Would you have more freedom when you are better protected from Pseudomonas spcc. and other potential infections? " a="text"/>
+ <QaBox q="text" a="Definitely. That is a big increase in the quality of life and that is a win. It also changes the picture people have of the illness. Of course being protected by prevention is good already but effective therapies for infections increase the sense of freedom even more. "/>
+ <QaBox q="You said you are afraid every time you must go for a swab, why is that? " a="I am afraid of getting an infection. That still could be a death sentence. "/>
+ <QaBox q="Are rooms with air conditioning a problem due to the possible germs in the air conditioners? " a="No, there is usually enough movement. But humidifiers are bad because of the pond water. "/>
+ <QaBox q="You mentioned going to the hairdresser is problematic. Could you elaborate? " a="There are many possible sources of ponding water and with that, infections. That and the hygiene aspect in general. I am visited by my hairdresser, and he only uses a specific spray bottle to wet my hair that I keep and dry thoroughly between uses."/>
+ <QaBox q="Are you the first person in your family that has CF? " a="Yes. But I suspect my father has a light or atypical form because he has suspicious mucus."/>
+ <QaBox q="With life expectancies looking better, do many patients want to have biological children?" a="Not all but some. I think some would be interested in a therapy that can be done on the fertilized egg to have a healthy child. "/>
+ <QaBox q="Do you know the film “Five feet apart� If so, what do think about it, is it accurate? " a="Yes. It does not paint a wrong picture; their progression is possible."/>
+ <QaBox q="Do you think there has to be more effort concerning diagnostics?" a="Early diagnosis is covered by the screenings."/>
+ <QaBox q="Since you almost had to sue for your medication, do you know if there are any lawyers specializing in cases like this? " a="No, I don’t. "/>
+ <QaBox q="Are most of the other patients you know in good health like you?" a="No. Another boy my age got a fungal infection and does not have long time left to live. "/>
+ </>
},
{
title: "XXX",