The last few weeks, I have updated you on my recovery and preparations for the remaining 410 km of my camino towards Santiago de Compostela.
Everything is still going fine. I have been training every weekend. I have collected all the stuff that needs to go into my backpack: sorting, weighing, making decisions and trying to keep the weight below 8 kilos (food and drinks for the day not included). I have bought new ultra-light carbon walking poles - better for my back and for my ankles!
I have also sorted out how to get back to La Isla, the little town where I had to stop on June 3rd due to my ankle injury. I have even tried to learn some Spanish, and I think I am able now to call an albergue and ask for a bed when needed. I am not sure, however, whether I will understand the Spanish answer.
In the meanwhile, I also wrote a new research fund proposal for the Chromosome 6 Project together with the project group. It is only a pre-proposal, which means that upon selection we will have to write a full proposal. We will be informed about whether we are allowed to submit a full proposal by November 1st, so several weeks after I have completed my 1200 km walk (if everything goes well). Let’s keep our fingers crossed!
Obtaining money for rare diseases remains very difficult. Nonetheless it so much needed! Kate, one of my dear colleagues wrote the following piece of text which whole-heartedly embrace:
Why work closely with parents?
Parents of children with a rare genetic disorder are the ultimate citizen scientists. The detailed observations they make about their children, and the analysis they do on a daily basis, make them the best partners in discovering what is really going on with their children. Because so little is known about the phenotype, and because it can be so variable, parents must work on their own to determine what their child is like. They may do this in collaboration with and assisted by medical professionals, but in the dark of night it is parents who observe a situation and can describe it in detail. This makes parents crucial to this project. We geneticists can look at the change in a child’s genome and make predictions about what its affect may be, but it is ultimately parents – our keen observers – who will be the ones to say whether these prediction are true. They can also point out effects that were not predicted, which may provide clues to how genetics works in ways we are still figuring out.
If you agree with Kate’s words, why not let us know by making a donation?
Donate options
JustGiving
PayPal
Geef.nl
Tikkie (Dutch only)
Direct bank transfer:
Bank account: NL21 ABNA 0423 1266 95
In the name of: Stichting Steunfonds UMCG
Reference: 4950351 Chromosome6
SWIFT-BIC code: ABNANL2A (for international transfers)
Okay, since this is my last update before I restart my camino, below is my last compilation of photographs. This time the theme is flowers and, since I walked in spring, they are typical spring flowers. Enjoy!
Please go to chromosome6.org/walkforchromosome6
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