Meeting between the Maracaibo patient associations, Factor-H and Fundacion Habitat Luz, an architecture and engineering NGO, in Maracaibo... the beginning of our efforts to bring change to the communities most affected by HD in the world
Happy New Year 2018!
On Monday December 11th, we held an all-day meeting in the offices of Fundacion Habitat Luz, a Maracaibo, University-based NGO that focuses on community development programs. This Foundation has been conducting work in Maracaibo for 20 years. Factor-H organized the first meeting between professionals of Fundacion Habitat Luz and the two HD associations working in Maracaibo - Fundacion Huntington Zulia (centered in Barranquitas, the largest cluster of HD in the world), and Fundacion Amigos Huntington, recently formed in San Luis (San Francisco municipality). Several professors, architects, engineers and economists from Fundacion Habitat Luz attended the meeting and presented their ideas for how to improve these two communities. The acting director of Fundacion Habitat Luz is a very talented and committed architect who is very committed to working with us to help these families. Her name is Marina Gonzalez de Kauffman, and we have quickly become friends. Her vision, and that of her team, will be instrumental in implementing our goals for helping those communities.
Marina and the Foundation had actually done a lot of work in the early 2000s in a project funded by Shell (a company that used to have a big investment in the oil fields found in Maracaibo Lake). In this project, they mapped out the entire town and defined areas for intervention. Most of the HD families are extremely poor, live in corrugated steel 'homes' without running water, and in occupied land, which is subject to floods and black water issues, as the entire town does not have proper sewage systems in place. The work that they did then will now be updated and we will work to define priorities for the community. This includes building a community center (with showers and bathrooms and children's play areas) as well as spaces to hold meetings. The next step is for the Fundacion to hold a first visit to Barranquitas, together with Fundacion Zulia, and to hold meetings with the affected families to start canvassing their views.
In San Luis, the first visit to speak with the community is planning for January 11. Recently, a new association got started there, funded by young people from affected families. This is a big development for this town and I can say that the meeting with Pope Francis and our visit there was a catalyst to get these young people motivated to ACT. The association is run by 6 people from the community, all from affected families, and they are extremely motivated to help. Factor-H has decided to help them financially and they will act as the main link to the families in this cluster. Edinson Soto and Argenis Gotera are two of the Foundation's leaders - and we have formed a very close relationship already.
The reality is that the situation in Venezuela in general, and in particular for these communities, is very dire. It is hard to describe in words, so i have added a few pictures below so you can see how some of the patients live. Many don't have any food or medicines, no beds to sleep on, and no electricity. Many patients roam the streets looking for food, and they can get into a lot of trouble. One of the patients we brought to Rome to be blessed by Pope Francis, for instance, was severely beaten up because she has been showing aggressive symptoms. Life is tough in these communities, and we hope we can bring some relief, and a long-term strategy, by teaming up with professionals who have shown an interest in working with us.
Where is all the money for these community-development project coming from?
Well, since the Pope audience in Rome, we have been very fortunate and Factor-H received some very significant donations thanks to the efforts of our friend and colleague Dr. Elena Cattaneo. The funds will be directed mostly to help these two very special communities who played such a large role in the cloning of the Huntingtin gene in the 80's an 90's. All in all, 2018 is going to be a very significant year for Factor-H, and hopefully, for all Venezuelan patients.
First direct aid from Factor-H to Fundación Huntington Zulia in Barranquitas, Maracaibo
Getting help to Venezuela is very difficult these days. We are getting there by finding clever ways and working with many people.
Recently we donated funds to start two programs in Barranquitas (the largest concentration of HD patients worldwide).
The first is a continuous efforts to provide food, medication, mattresses and wheelchairs for this community. People are faring worse each day, as food supplies are scarce and prices have gone up due to inflation. All kids are malnourished, have parasites and need medication. Getting medicines to them is a big issue that we are trying to solve.
Our work there would not be possible were it not for Fundación Huntington Zulia, led by Zulay, Iria and Samuel. Together we will work tirelessly until this area stops being a ghetto for Huntington's patients.
The second program is the extension of Proyect Abrazos which we started in Colombia 2 years ago. For the first time, we are now sponsoring 10 children from Barranquitas. I will be heading down to Maracaibo in December, when we are hosting two Christmas parties for 132 and 200 kids in San Luis and Barranquitas. All of the children are at risk for HD and are very poor. We hope through these efforts the community will develop more trust in us.
Bringing a smile to these children is important. Their lives matter. Their futures matter. We will not forget them and they will experience a different reality from that of their parents.
Factor-h signs collaborative agreement
with fundación de Antioquia in Medellín, colombia
Fundación de Antioquia is a Colombian NGO associated with the University of Antioquia in Medellin, one of the oldest and largest universities in Colombia. The Foundation was founded 22 years ago to help support, manage and implement social projects in the State of Antioquia. The medical team in the University works actively with Factor-H and also is a leading group of care and research of neurodegenerative conditions in the country. Through this collaboration, the Foundation will manage all financial aspects of Factor-H and will help implement various projects throughout Latin America to help HD families. This agreement also allows Factor-H to be able to receive donations from individuals, and not just corporate organizations, and the donations will be tax-deductible. We hope this is the beginning of a long-lasting and fruitful collaboration which will enable larger projects to take place in Colombia and Venezuela.
A few weeks ago, Sonia Moreno, Roger Cachope and Nacho visited the offices of the Fundación de Antioquia in Medellin, where we signed the agreement. Below are pictures of the event, who was attended by Dr. Fernando Múnera, director of the Fundación, Mónica Gómez Henao, lawyer, and Juan Carlos Bedoya Mejía, who will handle all project management for Factor-H there.
Project Abrazos third event - year 2
The third gathering of at-risk children from Colombia took place in a hotel near the Caribbean town of San Bernardo del Viento. We spent 4 nights and 5 days together. The sponsored Colombian children were accompanied by Anyervi and Maria from San Luis, Maracaibo, Venezuela, for the first time bringing together children from the two countries. Alongside were volunteers from Funcovulc, our local patient association. Mariela Campo, together with her son Eduardo, Funcovulc member Arnel and other HD family members, helped organize the event. This time around, we brought two teachers from Bogota, Oscar Mario (a science teacher) and Manuela (an art teacher), and some local child psychologists who worked with the children during two days. We also had a local general physician evaluate the kids and prescribe them medications as needed. Last year, almost all of the children were undernourished. This year, only 4 of them were below the normal weight range. Most of them had improved.
This is our third gathering and all the kids have become friends. Some of the kids who were shy and not very social were transformed this year. They all got along well, played together and laughed swimming in the ocean and the pool. We also organized a nature trip through the local mangroves, and we removed plastic objects from the local beach (500 meters from the hotel). Philip Hardt aslo joined us and he gave the kids a lesson about HD. Altogether, we had a fantastic time together and we were able to understand the progress that we are making wiht the kids.
For Phase 2 of Project Abrazos, we conversed with a few adolescents at risk for HD, so that we can best help them to continue in school and start planning for professional development training. Sonia Moreno from Medellin evaluated the mothers and the teenagers and we will be crafting a proposal for their continued development. One of the JHD patients from San Angel also joined us with her mother for the first time, and he really enjoyed being on the beach and in the pool.
Thank you to everyone who has contributed to this wonderful project, and to all the donors who make this possible!
Vatican audience with Pope Francis, May 18, 2017
A historic event took place on May 18, 2017 at the Vatican, Rome. For the first time, a world leader received hundreds of HD patients from 26 countries. What started as an idea born out of desperation at our inability to help those most in need from Maracaibo, Venezuela, led to the largest gathering of patients and families affected by Huntington's disease the world has ever seen. Almost 150 symptomatic patients plus countless others at risk and their families, came together in the largest show of solidarity with our Latin American friends. It was an event marked not only by the historic address by Pope Francis, but also by what might be the beginning of a world-wide movement to end the stigma and discrimination that marks families affected by HD. The mood was one of excitement and hope. People came from as far away as New Zealand and Australia. We all came together to speak the truth about the disease and about the needs of those affected by it.
Ignacio and Claudia from Factor-H, together with Charles Sabine (former NBC correspondent and HD advocate) and Elena Cattaneo, world-renowned scientist and Senator for Life from Milan, led the organization of the event. We crafted the idea over a year ago, when we met at the CHDI Therapeutics Conference in Palm Springs, California. I suggested maybe the only avenue to help the impoverished communities of Maracaibo might be through the Catholic Church. Charles quickly suggested that we should contact the Pope. Elena said she had some contacts in the Vatican. And the story begun to unfold. 7 months later we heard back the good news from the Vatican. He had initially suggested we fly one patient to be blessed by the Pope, but in the following months the event grew in ways we never anticipated. We raised money to fly 5 families from Colombia, Venezuela and Argentina (see the HDdennmore web site and also our YouTube channel and see the families' stories as told through short films produced by our friend Brian Moore).
Then 7 more families from Brazil came to join us in Rome during our entire stay in the Passionisti convent. And people from all over the world arrived on May 18 to be part of this incredibly moving event. Pope Francis speech was remarkable in its depth and in the fact that he outlined all the main issues facing these families, particularly those living in conditions of extreme poverty. The families that made the trip with us from South America experienced something that no one could have explained to them. The Pope blessed them and one by one proceeded to touch the hearts and souls of every single family member and patient that arrived from near and far away lands.
The trip from South America was not easy. I went to Maracaibo and gathered the two families from San Luis and Barranquitas, together with the representatives of the local associations (Fundacion Zulia y Avehun - Asociacion Venezolana de Huntington), as well as our friends and colleagues Drs. Ernesto Solis (Maracaibo) and Roberto Weiser (Caracas). We flew from Maracaibo to Panama where we met the two families arriving from Colombia. One family came from El Dificil, and one from Medellin, along with Drs. Sonia Moreno (Medellin) and Gustavo Barrios (Bogota). This was the first time most of these family members had been on a plane, and the first time they left their countries. Traveling with sick HD patients is not easy - but we all pooled together, supported each other, and got to Rome after spending a wonderful day in Panama, where we visited the Panama Canal.
Once in Rome, we met with the Brazilian families and Brenda, the 15 year old Argentinian girl who stole our hearts. With her came her aunt Normal, who raised her after Brenda's mother left. Claudia flew with them and their doctor Alejandro Pellene. Together we united in Rome as part of a large family bound by the disease, love and solidarity. We came as different groups and we left as one big family. This was one of the most extraordinary moments in our life, and one that hopefully marks a turning point for Factor-H and for our quest to improve the quality of life, the dignity and the hope of poor families affected by HD in Latin America.
Visit to Maracaibo communities in preparation for the visit to the Vatican on May 18, 2017
Last month I went to Maracaibo again for the first time since 2013. I took with me Charles Sabine, a friend and HD advocate from the UK, and Brian Moore, film-maker from Ireland. Both of them are part of the HDdennomore coalition in charge of organizing the event at the Vatican on May 18, 2017. Neither one of them had ever visited Venezuela or Colombia. We had come to see the two main Huntington's clusters in the world: one right outside the city of Maracaibo, San Luis (in the municipality of San Francisco); the second one and the largest is the town of Barranquitas, approximately 3 hours by car from Maracaibo. We had selected one family from each cluster to come to the Vatican to be blessed by Pope Francis.
For videos of the families and the event, please see our YouTube channel here!
It is hard to describe the situation in Barranquitas right now. It's hard to envision things can get much worse. At the moment, it is estimated that close to 200 symptomatic patients live in a small area of a few square blocks. A third of the township of approximately 12 thousand people are at risk for HD. Hundreds of dirty and hungry children run around the streets. Many of them will die of Huntington's. At the moment, the only help they can get comes through the wonderful work of the local and national HD associations, lead by Zulay Pinol Romero in Barranquitas, and by our old friend Aleska Zambrano in Caracas. They raise money for food and clothes, wheelchairs, diapers etc. Recently, the Barcelona association was able to send some money for the patients. This time, Factor-H had sent US $1500 to buy medication and food for both the San Luis and the Barranquitas communities. We were able to feed close to 150 families.
In Barranquitas, most people use to work in the fishing industry. The lake is very polluted now due to the oil and chemical spills from the oil rigs in Lake Maracaibo. There is much less fish in the Lake, and most people now survive catching crabs which are sent out for export - mostly to the United States, we are told. Their livelihood is threatened by pollution and lack of alternative employment. Over 50% of people don't work. People are starving. The current situation in Venezuela has also contributed to the desperate situation they face - inflation reaching 700% now, people cannot afford to buy basic nutrients. Literally, the patients are starving to death.
With the local church, we cooked a meal for the whole town. People waited for 2 hours until the food was cooked (a stew with meat and vegetables, which they never get), sticking their hands with their plastic containers for the stew through the fence. It looked like a scene from a war-zone. Hundreds of children, and many patients waited to be fed.
In spite of their difficult conditions, and of having no help from the government, people were extraordinarily welcoming to us. We filmed all day in the unbearable heat and humidity. we spoke with them, delivered food donations to 100 families, and dispensed medication for parasites, skin and eye infections, and antibiotics. Every kid is sick here. Patients die inside zinc-houses in the heat with no running water inside and no diapers or adequate beds. We were told stories of patients dying and their stomachs bursting with worms. We cannot stand alone and witness this situation. These are the relatives and descendants of the very same people who donate their samples so that the gene for Huntington's disease was identified.
Below are some images from the trip. Lets get organized. Lets not abandon them any longer. Contact me if you want to help.
vital food and medicines delivered to the patients in barranquitas
Factor-H and Funcovulc organize the first medical brigade in El Dificil, Magdalena (Colombia)
I am posting this now on Sunday March 26, 2017, as the web site was being redesigned.
In December, myself and a few colleagues from the USA and Europe traveled to El Dificil, home of the Funcovulc association, to help with the first medical brigade directed to help the communities from several towns around El Dificil, in the Department of Magdalena, where a lot of the patients live. Mariela Campo, Funcovulc's president and founder, and myself have tried to do this for a couple of years now. She was able to get the "Hospital Alejandro Maestre Sierra", a local ambulatory clinic, to make the facilities available for seeing patients. On December 10th, Saturday, we got up really early and went to the clinic to prepare for the families coming from a 100 mile radius. At the beginning, we were nervous as we did not know if people would come.
Mariela had arranged for a couple of buses to pick up people from the countryside. Many of affected HD families do not have transportation or money to be able to come to an event like this. Factor-H donated the funds to be able to arrange for transport from several towns. As you will see from the pictures below, over 250 people came from all over the region.
Organizing an event like this is difficult, and we learned a lot in the process. The clinic agreed to donate basic medication which the local doctors could prescribe. Mostly antibiotics, anti-parasite medications, skin creams etc. What we lacked was neurological medication, so the HD patients that came could not go home with their medication. Instead, two local neurologists who volunteered their services (Dr. Gustavo Barrios, who came on his free time from Bogota and Dr. Jean Carlos Monsalvo, from Santa Marta) were able to prescribe them what they needed, and refer them to a local neurology clinic in the closest large town (3 hrs away) in Santa Marta. Accessing specialized neurological care is very challenging for these patients, as it is very difficult for them to travel to see a neurologist.
This event also marked an important turning point for our efforts at Factor-H. First, for the first time we were able to get doctors from the US and Europe to come help. With us came HD expert from Ulm (Germany) Dr. Michael Orth (who also speaks fluent Spanish), Dr. Robert Pacifici (CSO of CHDI Foundation, where I work), and his wife Dr. Eunjoo Pacifici, a Pharmacy PhD from USC. From USC as well came Dr. Naomi Florea, who directs a program at USC that organizes medical missions in developing countries with medical trainees. They had come to evaluate whether this part of Colombia would be suitable to bring their students in 2017 or 2018. They left feeling very touched by the needs they saw, and by the wonderful nature of the people of Colombia. We are now working to organize the USC-sponsored medical mission, which would bring all types of medication and devices. At the moment, we are trying to obtain the permits needed to bring such an amount of medical supplies into the country. We all hope this will happen soon.
From Chile, our friend and kinesiologist Natalia Rojas also joined us for the first time. From the US, long-time advocate and HD family member Phil Hardt spent ten days with me as well and helped with the event.
When people started arriving in buses or on foot, we realized we had to plan better... we needed to dispense to each individual all the vitamins, headache tablets, ibuprofen, etc. that the Pacificis had brought with them from the USA as a gift for the event. Almost everyone we saw lacks adequate nutrition and needs vitamins and minerals. We spent a lot of time placing enough supplies for a month for each person in small containers. All the children (I would say over 100 of them) had intestinal parasites and were malnourished. They all went home with antibiotics and anti-parasitic medication, which was given by a few local volunteer doctors and medical students.
Myself and Dr. Roger Cachope (also from Factor-H) acted as translators for the medical professionals from abroad. All of the families affected with parasites or bacterial infections probably got sick from drinking rain water that they store outdoors in large plastic containers. Almost none of them have access to running water. Access to clean drinking water is one of the most urgent needs of these populations.
Thanks also to the dentists who volunteered their time to see every single person, no one went home without being seen by the dentist and the clinicians.
Overall, we worked a 12-hr day seeing everyone that came. We provided drinks and food for all of them, also sponsored by Factor-H, and it was a terrific experience for every one of us who came from outside. We realized even the patients and their relatives were ill-informed about HD. I gave the adolescent kids at risk a crush course on HD. Many thought you could catch it if you had sex with a person at risk for the disease. We realized we need to spend a lot more time developing audio-visual material to educate these communities.
I wanted to end by expressing my deepest gratitude to all the amazing volunteers from Funcovulc for their efforts and their dedication to their communities. And to my friends from abroad who took the time to come with me to this remote location and who worked long hours in the stifling heat.
Video of the delivery of the invitation letters to the five families coming to The Vatican to meet Pope Francis on May 18 2017
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