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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