ExploreforHuntington

20/09/2022

Bravo à toute cette famille et cette magnifique leçon de vie ! Le Kilimandjaro à 5895m d'altitude !!! 🏔️

Et félicitations plus particulièrement à Olivier atteint de la .

Vous avez toute mon admiration Charline et Théo pour vos défis chaque année 👍

Allez les encourager sur la page :

On détonne contre Huntington

Csport vous emmène sur le point culminant de l'Afrique avec une famille du pays d'Auge. Charline Pouillet a déjà gravi le Mont Blanc, traversé la France à vé...

16/09/2022

I wanted to make this post to thank all the people I met on my way and who help me.

As I always say, I am never really alone, there are always caring people and believe me that I am currently living the most human experience of my life.

Also with my project concerning Huntington's disease, you are hundreds people to send me messages, to encourage me, to help me financially and this project we realize it all together.

Thank you all, it means a lot to me !!

Sorry for the people I couldn't put in my post, there's a limit on Facebook but I also think about you.

Again many thanks to all of you, you are wonderful guys !!!


Je tenais à faire ce post pour remercier tous les gens rencontrés sur mon chemin et qui m'aide.

Comme je le dis toujours, je ne suis jamais vraiment seul, il y a toujours des gens bienveillants et croyez moi que je vis actuellement l'expérience la plus humaine de ma vie.

Également avec mon projet concernant la maladie de Huntington, vous êtes des centaines à m'envoyer des messages, à m'encourager, à m'aider financièrement et ce projet nous le réalisons tous ensemble.

Merci à vous tous, ça me touche beaucoup !

Désolé pour les personnes que je n'ai pas pû mettre dans mon post, il y a une limite malheureusement sur Facebook, mais sachez que je pense également à vous.

Merci à tous les ami(e)s, vous êtres extraordinaires !!

14/09/2022

Laguna 69 - Huascarán National Park 🌄

Laguna 69 is a small lake near the city of Huaraz, in the region of Áncash, Peru.

It is one of the more than 400 lakes that form part of the Huascarán National Park, a UNESCO Biosphere Reserve and World Heritage Site

To access the lagoon, you have to hike 14km round trip and 900m of elevation gain.
It culminates at an altitude of 4604m.

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12/09/2022

I recently took advantage of doing a bike loop in Huascarán National Park.

The landscapes are really impressive and you can observe mountains that rise to more than 6000 m above sea level.

By bike it's quite physical, many passages on very difficult roads (rocks, sand, gravel), a lot of elevation gain and passages up to 4800m altitude.

I also passed through isolated villages and I had the chance to interact with many locals. In this region, the locals still speak "Quechua".

I had an amazing time in Huascarán Park on my own, it was a wonderful experience. I'm a mountain lover and here it's a perfect place to enjoy it.

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11/09/2022

Un tema muy importante que aborda Javier del blog Vivir con ella .

Las pruebas genéticas son la única forma de evitar que esta enfermedad progrese de generación en generación.

Debemos ser responsables para evitar que las generaciones futuras desarrollen esta enfermedad.

Todos los que estamos relacionados con la enfermedad de Huntington tenemos la responsabilidad de saber e informar que esta enfermedad es una enfermedad hered...

05/09/2022

Cajamarca - Caraz
(https://bikepacking.com/routes/dirt-road-touring-peru/)

We're passing through many wonderful landscapes. Nature in Peru is mind blowing.

We do a lot of unpaved road and accumulate the uphills and climbing up to 4400m altitude.

Cycling at this altitude with a bike loaded at 30/40kg is challenging. Breathing becomes shorter, vision changes, efforts become more and more intense, and sometimes a headache occurs.

In order to feel the altitude as little as possible, you have to acclimatize beforehand. Fortunately we have been riding for months at high altitude and we are well acclimatized.

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04/09/2022

I recently had the opportunity to meet other French cycle travelers.

We spent 10 days together and covered 551 km and 11,050 m of elevation gain from Cajamarca to Caraz.

We followed the itinerary from "bikepackikg.com" website:

https://bikepacking.com/routes/dirt-road-touring-peru/.

A magnificent path that allows you to get off the beaten track and go through isolated places.

On the menu : high mountains up to 4400m, rivers, a canyon, many villages where no one had ever seen tourists before, marvelous encounters.

And also a few troubles, I fell, I had problems with my bike and had to hitchhike, we got sick...

In 10 days of cycling, we lived a lot of experiences together, a real adventure.

Thanks to Martin and Dries for their kindness, we shared unforgettable moments.

I recommend that you go follow them on their adventures :



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03/09/2022

Camp at more than 4000m gives you the opportunity to see the milkyway 🌌


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21/08/2022

Je vous partage un article publié par France 3 Nord Pas-de-Calais concernant mon projet ExploreforHuntington .

Merci à toute l'équipe de France 3 pour sa collaboration.

Pour visionner l'article, cliquez sur le lien ci-dessous 👇
https://france3-regions.francetvinfo.fr/hauts-de-france/nord-0/portrait-dimitri-poffe-l-amerique-latine-a-velo-pour-sensibiliser-sur-la-maladie-de-huntington-2599216.html

20/08/2022

I wanted to introduce you to Fabiana, a 15-year-old girl with juvenile Huntington's disease from Cajamarca in Peru.

Fabiana developed the disease at the age of 3, very young, she has 86 repeats (CAG), a number that I had never seen before.

Her mother, Zoila is doing her best to help her daughter who unfortunately is already at an advanced stage of the disease.

Indeed Fabiana has already stopped talking, writing, eating, walking and can hardly sit up. She benefits a wheelchair that was given to her and she can't even sit in it anymore. So she spends her days lying in her bed.

Fabiana's dad developed the disease at the age of 36 and the symptoms were very intense in him. The disease progressed very quickly and in barely 10 years he was already at a very advanced stage.

Anxiety, aggressiveness, depression, excessive anger, the symptoms that we all know about this disease and which make the task very difficult for caregivers.

Fabiana's mother lost her husband at a very young age and found herself having to take care of her two little girls alone.

Fabiana has a sister, Alisson, 14, who, meanwhile, is still healthy and in shape. She studies and helps her mother and her sister. Of course, she lives in fear of developing, herself, this terrible disease from which her sister is suffering.

Zoila is a very courageous mother, she survives on a poor salary as a saleswoman and dedicates her life to her children, an incredible life lesson.

I was really very happy to meet this family, discuss and share our common experiences with Huntington's disease.

It's always very sad to meet families affected by this disease and it's even more when it affects children.

I have a lot of pain for this family and I really hope that Alisson, her sister, will remain in good health and will be able to overcome those difficulties that she should not experience at that age.

I hope with all my heart to have brought some light to them, to give them hope and to show that they are not alone.

Thank you Zoila, Fabiana and Alisson, you now have a new friend to rely on, together in the face of Huntington's disease.




Je voulais vous présenter Fabiana, une jeune fille de 15 ans atteinte de la maladie de Huntington juvénile et originaire de Cajamarca au Pérou.

Fabiana a développé la maladie à l'âge de 3 ans, très jeune, elle a 86 répétitions (CAG), un nombre que je n'avais jamais vu auparavant.

Sa mère, Zoila fait de son mieux pour aider sa fille qui est malheureusement déjà à un stade avancé de la maladie.

En effet Fabiana a déjà cessé de parler, d'écrire, de manger, de marcher et peut à peine s'asseoir. Elle dispose d'un fauteuil roulant qui lui a été donné et elle ne peut même plus s'y asseoir. Elle passe donc ses journées allongée dans son lit.

Le père de Fabiana a développé la maladie à l'âge de 36 ans et les symptômes étaient très intenses chez lui. La maladie a progressé très rapidement et en à peine 10 ans il était déjà à un stade très avancé.

Anxiété, agressivité, dépression, colère excessive, autant de symptômes que nous connaissons tous de cette maladie et qui rendent la tâche très difficile aux aidants.

La mère de Fabiana a perdu son mari très jeune et s'est retrouvée seule à s'occuper de ses deux petites filles.

Fabiana a une sœur, Alisson, 14 ans, qui, quant à elle, est toujours en bonne santé et en forme. Elle étudie et aide sa mère et sa sœur. Bien sûr, elle vit dans la peur de développer, elle-même, cette terrible maladie dont souffre sa sœur.

Zoila est une mère très courageuse, elle survit avec un maigre salaire de vendeuse et consacre sa vie à ses enfants, une incroyable leçon de vie.

J'étais vraiment très heureux de rencontrer cette famille, de discuter et de partager nos expériences communes avec la maladie de Huntington.

C'est toujours très triste de rencontrer des familles touchées par cette maladie et encore plus quand elle touche des enfants.

J'ai beaucoup de peine pour cette famille et j'espère vraiment qu'Alisson, sa soeur, restera en bonne santé et pourra surmonter ces difficultés qu'elle ne devrait pas rencontrer à cet âge.

J'espère de tout mon cœur leur avoir apporté un peu de lumière, leur avoir donné de l'espoir et leur montrer qu'elles ne sont pas seules.

Merci Zoila, Fabiana et Alisson, vous avez maintenant un nouvel ami sur qui compter, ensemble face à la maladie de Huntington.

14/08/2022

Santa Cruz - Perú 🇵🇪

I arrived in Peru only a week ago and I already experienced a bunch of adventures.

I crossed a desert with a strong headwind, I climb mountains up to more than 4500m in altitude, I crossed lots of small villages where there are absolutely no foreigners and people see me as an extraterrestrial.

Peru challenges me, physically and mentally it's difficult, I accumulate the kilometers and I feel like I'm not moving forward because it's so huge.
The landscapes are magnificent and the weather too.

But what strikes me most for the moment here is the friendliness and solidarity of the people. There are many people who call out to me and are interested in my trip, they encourage me, they pick me up, they invite me to lunch and they even offer me a place to sleep. It's really amazing the hospitality of the people here.

I am currently heading to Cajamarca where I will arrive in a few days to rest and recover because I am exhausted. Moreover in Cajamarca I will meet a child who is suffering from Huntington's disease.

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