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>],
insights:[<><p>His honest and open answers to us, mostly nothing more than strangers to him, were touching and let the seriousness of cystic fibrosis set in. Learning about the challenges he faced felt heavy, besides him being relatively healthy and having a good life quality as a CF patient.
</p>
<p>Additional to the interpersonal effects of our discussion, Max gave us the reasons to continue with gene therapy approach while focusing on the lung:
Modulators do not erase all symptoms
There is a keen interest for new treatments in the CF community
The lung function is most affected for most patients
The immense impact of treatments on the life quality </p>
<p>We learned a lot of new things that we did not consider before about cystic fibrosis such as:
The need for a calorie rich diet and digestive problems
The frequency of checkups needed
How vastly different the progressions can be
The increased need for hygiene
The high price of medicines and induvial therapeutics </p>
<p>Afterwards, we reflected on the discussion and asked our team members what stuck with them:
“How much attention has to be paid to everything in everyday life, I hadn't even thought about problems at the hairdresser.”
“Simply that he was there and reported everything in such detail. From minute 1, I had permanent goosebumps because I was so moved by this story. I think it's great how he stands his ground in life, does what he wants to do and what defines him as a person. It didn't seem as if his life was determined by CF. I somehow expected it to be different, even if that sounds a bit silly.”
“The amount of medication and how expensive it is.”
"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.”
“The variance in the extent of the limitations of the disease in different patients, including how the disease differs in its severity, even in patients of the same age.”
“How positively and calmly Max deals with his illness but has also pointed out that he is lucky, and that other people are much worse off - how much you have to pay attention to little things that you wouldn't have expected as a healthy person.” </p>
</>],
implementation:[<><p>This most important aspect of this meeting was less an insight, but the fact Max helped us to put a face to an abstract idea. Many of our ideas were interesting and adventurous but meeting him put a lot into perspective. </p>
<p>Our focus shifted to the safety of our creation. When coming up with ideas, we asked ourselves,
Is this idea a promising or an interesting one?
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></>],
