Asociación Mexicana de la Enfermedad de Huntington – AMEH

   Let’s get back on the event at « Asociación Mexicana de la Enfermedad de Huntington – AMEH » on Wednesday
13th october 2021.

  I had the pleasure to meet ,Donaji Toledo, the president of the Mexican Huntington Association and the team of doctors who are working for the Mexican National Institut of Neurology.

  We had a really good time all together and we shared our knowledges and experiences about Huntington Disease.

  Donaji showed the association and their work. It was really interesting to see what they’re doing and how they’re helping people.

  Here we can find a room for consultations with a psychiatrist, a place where they’re doing somes exercises to help with motor symptoms and speech disorders (mouth specific exercises), a lot of wheelchair and material available and also a beautiful garden where patients can rest. They even have a van to transport patients.

  Donaji is a wonderful person, she’s dedicating her life to help people affected with Huntington Disease. She’s working as a president since many years and do things from the bottom of her heart. Here all the people are very nicely welcome and they can feel comfortable.

  Her relationship with Huntington Disease started with her mother, who lived with the disease for 30 years more or less. Donaji helped her mother for all this time and learnt what’s to live with Huntington. And as you can guess, as it’s a hereditary disease, she’s also at risk but refused to get tested. She’s so positive about life and it’s very inspiring to listen about her experience.

  The Mexican Huntington Association work closely with the National Mexican Institut of Neurology. Geneticians and doctors came to learn about my project exploreforhuntington. It was an honor to meet all of them and I learnt a lot of things about their work.

  Thank you for this wonderful day and especially Donaji to organize this event !

History

   Addressing the need of people with Huntington’s disease, in 1992 through the concern of a group of relatives of patients affected by the disease and as well as health professionals, the AMEH was founded with the aim of improving quality life of the sick and was legally constituted as a Civil Association on January 17, 1994;  It was transformed into a Private Assistance Institution on June 16, 1997.

Due to the increase in patients and the human needs involved, the Fundación “Alma Fondo de Ayuda” I.A.P., granted AMEH a house on loan.

Mission

   Provide knowledgeable Huntington’s disease patients and their families with knowledge;  in order to meet the basic health needs of patients and contribute to maintaining their physical and intellectual capacities for a longer time, allowing them to improve their quality of life.

Vision

   The Mexican Association of Huntington’s disease IAP, will continue to provide quality care services, with the ability to reach the states with the highest concentration of Huntington’s patients in the country, maintaining international ties with other organizations, raising awareness of the population in risk and promoting social participation through the dissemination

Values

1.- Love: They show interest and empathy for the needs of others, promoting the union and companionship of patients and their families thanks to the vocation and support provided by the people who collaborate in the organization.

2.- Honesty: They work with responsibility, transparency, being consistent with what they profess and do, which creates confidence in the work they do. Integrating a participatory work team, adding talents to achieve the unification of opinions, motivating respect to create a positive synergy throughout the organization.

3.- Commitment: They provide the beneficiaries with a professional and quality service, in addition to keeping them informed about the advances that arise, remaining loyal to the purpose of the organization.

4.- Respect: To each of the users who come to the Center, through acceptance, tolerance and confidentiality.

5.- Gratitude: Towards life, the people with whom we surround ourselves, the learning that patients give and all kinds of citizen participation since they forge the hope that the reality of beneficiaries, regardless of adversity, will have a improvement.

Instituto Nacional de Neurología y Neurocirugía « Manuel Velasco Suárez »

I had the chance to visit the National Neurology Institute of Mexico.

  Thank you doctor David Dávila to show me the institute and your work. Thanks also to all the team who are working at INNN, researchers, geneticians, neurologists. And of course a special thanks to Donaji, @dtoledob, who organized this visit.

  It was fascinating to learn about our genom and especially about Huntington Disease and genetics diseases. I had the opportunity to see how we’re finding the « CAG » triplets by using differents technologies.

  There’re differents areas of work, psychiatric, psychologist, genetic, neurology and working on all neurologic diseases.

  They also have a laboratory of research about huntington disease where they’re working on mouses.

  I could ask many questions about huntington and genetics, it was fascinating !

  And to finish, we visited the museum which we can find brains preserved in formal.

  The National Institute of Neurology and Neurosurgery « Manuel Velasco Suárez » is considered one of the main centers dedicated to the study of neurological sciences.

  Initially conceived as an institution where the three main divisions of clinical neuroscience are cultivated with equal academic importance: Neurology, Neurosurgery and Psychiatry, its results have proven that this design was the correct choice for the comprehensive study of brain diseases.

  It is one of the few institutions in the world that is exclusively dedicated to the research, teaching, diagnosis and treatment of brain diseases, from their molecular bases to their social components.

  It is a leading institution in Mexico, with great international recognition, which represents a unique opportunity to design programs, care guides and strategies for neurological, neurosurgical and neuropsychiatric conditions.

Genos Medicos

I had the pleasure to meet Rosi who’s working as a genetician in the laboratory of Genos Medicos.

They showed me their laboratory and how they’re working. It was really interesting for me to see how doctors are working on our genom and especially on genetics diseases.

What I can definitely tell you, it’s that we can do wonderful things nowadays with brilliants people associated to technology.

Genos Médica ® is a Specialized Center in Genetics, made up of a group of professionals.The team includes experts in Medical Genetics, Perinatal Genetics, Cytogenetics, Molecular Cytogenetics, Molecular Biology, Genetics Experts and Researchers.

They dedicate their efforts to provide comprehensive management to patients and relatives with hereditary and genetics diseases, so they have a specialized laboratory and consultation area.

They arose from the need to care for patients with genetic diseases. In Mexico, congenital malformations and chromosomal alterations are the second cause of infant mortality.

Thank you so much Rosi and all your team to showed me your work, it was fascinating !

Genómica Médica

Thank you all the team of @genomicamedica to welcome me today in their laboratory.

I had a wonderful time !

Genómica Médica is the leading Personalized Medicine laboratory in Mexico. They offer saliva DNA tests for risk assessment of common diseases, prediction of response to commonly used drugs, and diagnosis of genetic diseases.

Multidisciplinary group of professionals, with more than twenty years of experience in scientific research, develops high-quality innovation with cutting-edge technologies, offering personalized diagnoses and recommendations for health care.

Our genetic code is a map that helps define our body’s capabilities, anticipate disease risks, or predict response to certain medications – even before taking them.

Genómica Médica help people to have a healthier life through DNA studies that are carried out in a confidential, precise, fast, accessible way and with the support and guarantee of extensive scientific trajectory and the most advanced technology.

Gerardo Jimenez

Today I had the honor to meet @jerry_jimzsa, Gerardo Jiménez and his team at @genomicamedica

  Gerardo is a medical and biotech executive. Over 20 years of successful management in the biotech, genomics, healthcare, pharma and personalized medicine industries.

« CEO, CSO and principal investigator at health , scientific, and biotech institutions. Conducted lab research in genetics and molecular biology for over 15 years (USA and Mexico), founder and director of the National Institute of Genomic Medicine (Mexico), president of Biotechnology at the OECD for 7 years (Paris, France), and program director of Genomic Medicine and bioeconomy at Harvard for 5 years (Boston, USA).

  Doctor in pediatrics, Genetics and Molecular Biology, founder of two biotech companies : Global Biotech Consulting Group and Genómica Médica.

  Board Member at the United Nations, World Health Organization, Human Genome Organization, Genome Canada and others.

  International speaker with over 350 keynote lectures worldwide. Recipient of multiple honors and awards. »

  As you understood, Gerardo is someone passionate and really dedicated about his work.

  He has strong experiences, and it’s fascinating to meet him.

  Besides that, Gerardo is also someone very nice and friendly. I had a great time and I feel very grateful getting to know him.

  Thank you so much Gerardo to share your precious time with me and to learn about my project.

  You’re an amazing person and this project give me the opportunity to meet you.

Matériel

Afin de partir de façon sereine, un certain matériel est nécessaire pour entreprendre ce type d’aventure. Du matériel léger, pratique, confortable, solide et résistant aux intempéries ! À vélo, on est en permanence au contact des éléments et ça peut vite devenir un véritable enfer sans un équipement adapté.

L’idée est de privilégier la qualité à la quantité !

Bivouac

En vue d’être le plus autonome possible et de réduire les coûts, je vais essayé de bivouaquer le plus souvent possible.

Toutefois, j’envisage aussi de dormir chez l’habitant, de faire du « couchsurfing » (un particulier vous prête son canapé), airbnb, hôtels et hostels… Le but de ce voyage est aussi d’aller à la rencontre des locaux et voyageurs du monde.

Ci dessous, vous trouverez la liste de mon matériel pour dormir dans la nature en toute tranquilité.

  • Tente : MSR Hubba Hubba
  • Matelas : Mountain Equipment Aero Stat 7.0
  • Sac de couchage : Millet Trilogy Summit
  • Drap de sac : Sea to Summit – Drap de soie strech traveller pillow insert
  • Oreiller : Sea to Summit – Aeros Down Pillow
  • Lampe Frontale : Petzl Swift RL
  • Bâche : Grabber All Weather x 2

Cuisine

En ce qui concerne le matériel de cuisine, j’ai particulièrement choisi un réchaud multi-combustible :

  • Réchaud : Msr WhisperLite Universal
  • Filtre à eau : Gourde LifeStraw – Katadyn Hiker Pro
  • Popotte : Poêle Msr Ceramic Skillet – Msr Assiette Alpine Plate
  • Assiette et Bol : Sea To Summit Delta Bol
  • Couverts : Couteau Leatherman Pocket Tool, Alpine Tool Fork, Alpine Tool Spoon, Econome
  • Poche à eau : Ortlieb 4 L x 2
  • Cuvette Pliable : Ortlieb 5 L
  • Tupperware

Vêtements

Pour les vêtements, on privilégie les matières « technique » et le système des trois couches. Le but étant d’avoir des vêtements qui s’adaptent à tous types d’environnements :

  • Sous-vêtements technique x5 : Icebreaker / Gore GWS BL
  • Chaussettes mérinos x5 : Icebreaker
  • Collant long mérinos : Icebreaker Leggins
  • Tee shirt manche longue x 2 : Norrona Wool Hoodie – Norrona Equaliser Merino Zip
  • Tee Shirt manche courte x 4 : Nike synthétique
  • Veste Polaire : Norrona Falketind Alpha 120 Zip Hood
  • Pantalon softshell : Arcteryx Gamma LT
  • Short softshell : Arcteryx Gamma LT
  • Veste Gore Tex : Millet Hardshell Trilogy V Icon Dual GTX
  • Doudoune ultra light : Arcteryx Cerium LT
  • Pantalon de pluie : Decathlon
  • Chaussure : Millet Friction GTX
  • Sandales : Merrel Choprock
  • Gants léger : Ortovox 145 Ultra Glove
  • Gants long Gore Tex : Millet Alti Expert WDS
  • Bonnet : North Face
  • Sous bonnet : Icebreaker
  • Buff x2 : WoolPower Tube 200 + Buff
  • Maillot de bain : Seagale

High-Tech

  • Smartphone
  • Tablette portable : Galaxy Note Book 10.6
  • Liseuse Kindle 6
  • Disque dur externe 1 To – Western Digital
  • Cartes SD 128 Go
  • Batterie externe – Anker PowerCore 26800 mAh x2
  • Adaptateur universel

Accessoires

  • Porte accessoire étanche Sea to Summit
  • Trousse de survie
  • Bouteille MSR fuel
  • Sac à dos compressible Sea to Summit Sil Dry DayPack 22 L
  • Corde à linge Sea to Summit
  • Sac waterproof Sea to Summit x4
  • Gourde LifeStraw
  • Carte IGN Amérique du Sud
  • Serviette microfibre Sea to Summit