Donations are delivered to the suffering communities in Maracaibo - thanks to the Barcelona patients' association UEFH

As the country of Venezuela spins out of control and people run out of food and medication, the most significant communities affected by Huntington's disease in Maracaibo are starving. According to our friend and collaborator Dr. Ernesto Solis, a resident of Maracaibo and a tireless advocate of the families affected by HD there, people often times go without eating at all. Normally, they might get a meal a day. The conditions in these 'clusters', famous because of their contributions during many years to science, is shameful.

For the last couple of years, we were not able to provide any assistance as getting goods and money to Venezuela through international corporate donations has been an issue.

We tried shipping things by road from Colombia, but the Venezuelan government imposed restrictions on shipments and they closed the border, to avoid people leaving the country.

However, it occurred to us that maybe via Spain we could get help. Thanks to the kindness and generosity of the Barcelona association of patients UEFH (Union de Enfermos y Familiares de Huntington; see link to their Facebook page HERE), led by two remarkable women, Judit Serra and her mother Montserrat, they raised money and wired it to Maracaibo with the help of Dr. Solis.

Below are some of the pictures sent to us by Dr. Solis as the donations made their way to San Luis and Barranquitas.

THANK YOU to UEFH, to Ernesto and to Zulay Finol Romero, a sociologist leading the Venezuelan association in the Zulia district.

Thank you for their help, their perseverance and their spirit of solidarity with those most in need.

We must continue to try to help against all odds. They need our help, more than any other place affected by HD in the world.

Other patient associations can do the same- just contact us or UEFH to channel your donations directly to Maracaibo.

Together - we should stop these people from dying in misery and oblivion. We owe them, and they need us.

nacho

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New donations reaching families in El Dificl and San Angel, Colombia, via Funcovulc

Our work keeps progressing, albeit slowly, to assist impoverished families in Colombia and Venezuela. With the help of several small donations from pharmaceutical and biotech companies working in the field of HD, we were able to gather some resources to finalize our aid programs in 2016.

Thank you to those organizations who have helped Factor-H. Without them, we would not be able to operate.

And thank you to HDSA and Louise Vetter for their help in mediating the donation transfers.

Below are some images of the latest delivery of food to the 10 affected families selected based on need. Many of these families live in areas of extreme poverty. You might recognize some of the children sponsored by Factor-H via the 'Proyecto Abrazos' program. Thanks to our help, they get food more regularly and now have suitabel clothes and shoes.

During this donation period, Funcovulc has been instrumental not only in delivering the donations, but also defining the specific needs of these families. For instance, as you will see in the pictures, we are providing equipment for the families to be able to cook their meals. In the future, we hope to be able to renovate their homes, enable them to access fresh water via the construction of wells in their plots of land, and also give them access to solar-powered lights. We are working on all of these aspects at the moment, identifying key partner organizations in Colombia.

While this aid is not sufficient to take them out of poverty, I know for certain that we are the only people trying to help these families, and that our efforts are important.

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Final delivery of donations for AcolpEH in 2016

Janeth Mosquera and her team at AcolpEH work tirelessly for the benefit of the families living wiht HD in Bogota, Medellin and Choco, among other regions of Colombia.Factor-H has been working with AcolpEH for over 3 years now.

One of the programs we started a couple of years ago was a donations program, which this year has benefited 21 families affected by the disease.

AcolpEH was able to establish a collaboration with Jumbo supermarkets in Colombia, and we issued 'food cards' for each family participating in the program. With these cards, the families (or AcolpEH) can access a large number of stores throughout the country. AcolpEH, after obtaining Factor-H's written approval, is able to refill the cards, which allow the families to buy what they need. Each family also provides us with some documentation of what they buy to increase transparency. The ability to establish this collaboration wiht the supermarket chain enables Janeth and AcolpEH to immediately refill the cards for all the families - rather than having to deliver donations throughout the country each time. This year, we have refilled the cards five times, the latest one being last week.

Below are some pictures to show some of the recipients of our aid. Of course this system does not work throughout the country, particularly outside main urban centers, where a lot of poor families live.

To help those families (at the moment we are providing food donations for another 10 families in San Angel and El Dificil, via Funcolvulc), the volunteers at Funcovulc hand-deliver those donations. Last week we also sent the donation money to Funcovulc.

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Sometimes the families write Factor-H letters or they allow the organizations to videotape them after they receive the donations. It is a way of connecting us, and also documenting their lives so that we can understand better who they are and how best we can continue to help them. Below are 2 such letters we received. These are real stories of families affected by Huntington's throughout Colombia. Their situation often times is devastating. Meeting them and doing a little to provide some support and care is very important to us.

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New article about Colombia and Factor-H in the Lancet Neurology

Dara Mohammadi just wrote a final piece from the trip we took together to Colombia in April 2016. You can find the pdf of the article here: HD Colombia Lancet

Also read about Enroll-HD efforts here: http://www.enroll-hd.org/

Please note that even though efforts to initiate Enroll-HD are underway in Colombia, the project has been running for a few years in several sites in Chile and Argentina. Our hope is to ensure as many Latin American countries as possible are participating in Enroll. Patients and medical professionals will be integrated into CHDI's worldwide efforts patients will benefit - including those in remote communities. With time and the collaboration of our dear medical colleagues in Colombia, we will be able to access all patients and provide improved care.

Thank you

nacho

Article by Monica Roa - a lawyer working with Factor-H to protect the rights of the patients in Colombia

A couple of months ago, I met Monica Roa in Washington DC to discus whether we could team up to deal with the issues facing many of the Colombian families - the lack of institutional and government support, the refusal by many of the insurance companies (called EPS in Colombia) to provide them with palliative medication (tetrabenazine, antipsyhoctics etc) even though they have a right to do so under Colombian legislation. Similarly, there are no family planning and reproductive programs aimed at decreasing the incidence of HD in vulnerable communities. Because of all of this, I contacted Monica, a human and women's rights lawyer from Colombia living in Spain, to see if she could help. This article (click HERE) is the first she has written about the issues, and we plan to travel together to Colombia to organize a legal strategy to protect the patients.

Please read it, and thank you Monica!

 

Start of 'Proyecto Abrazos' - The Children's Project

Sábanas de San Angel - this past April. We pulled in with Fermín's car loaded with food, hammocks, and clothes. The scenery was arid - this region has suffered from a profound drought for a while now, and everything is dried up. The Cañahuate trees the only bright color amidst fields of dust and ochres. In the distance, up a path, a lonely house made of decaying wood and corrugated steel. In front of the house, two skinny horses made their way slowly away from the fence. It was a picture of desolation. Mariela had stopped by to ask how to get to our first visit, in a house nearby. Houses here are spread out, and they stand alone in the midst of fields that are now dry and devoid of vegetation. A lonely cow or a donkey or a horse are the only form of susteinance for these families. No water, no work, no food. These poor families received water once every 7 or 8 days, as they lack access to fresh water or electricity. When the rains come, things might change for them. Many work in the fields taking care of cattle. Without the rain, the cattle do not have much food to eat, no grass to graze, so there is no work. No water, no food either, as they cannot harvest their small plots of land.

It is in this area that many of the patients live.

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We could easily hear the groans of pain coming from the house. After almost 20 years of fighting HD, the father of the family was starving to death. A week after we left, he died.

As I mentioned before during my review of the trip, this time I had brought toys for the children. The first time I visited this area I recall feeling like I should have brought something to the many children I met then. This time I had gone to 'Toyr are Us' and bought 30+ stuffed animals, metal cars and other toys. This was my first stop and had all the stuffed animals in a large black trash bag. As we were talking to the wife of the patient, a little figure appeared hiding behind a large tree in the backyard. A small kid, very small for his age of 10, was looking from behind the tree as we talked. He had very large hazel eyes which looked inquisitively at us. I called him and asked for his name. I asked the mom whether he was their son - she said 'No'. He was family, but had been kicked out by his parents, one of whom also suffered from HD, when he was 2, and they had taken him in. Into a family that has no money, an adult HD patient, and a juvenile HD patient (who is now 24). Remarkable.

The kid -his name is Eduardo- did not have any shoes. I was told he walked to school each day for 1 hour - barefooted. His clothes were dirty, his hair and face too.

He would look at me from behind the tree, but would not answer to my attempts to engage him in conversation. I got up and I told him to follow me - he hesitated but when his 'mother' told him that I was going to give him a gift - he followed. I have never seen such a smile when he saw the contents of that black trash bag filled with toys. It was this smile, and the situation of this family, that made me revisit the idea of sponsoring the at-risk children living in poor HD families in Colombia. Proyecto Abrazos was born!

The reality is that most HD families in this region live in poverty - some of it extreme. The young kids lack almost everything you can think of. Shoes and clothes for school, backpacks, sneakers to play football, toys, etc. In every house we met beautiful children who are growing up with sickness all around, and with little prospects of growing up with the possibilities we would all like to give our children.

The idea of starting a 'sponsoring' program ('Apadrinamiento') for kids living in HD families was not new in my head. I had tried a couple of years ago to contact Unicef - but got no response. So after this trip I got tired and impatient (as I often do when I have made up my mind about something) and decide to just 'do it myself'. So there we go: opened a Go Fund Me account, called all my friends, sent a few emails, and raised the money I needed to sponsor 31 children of HD families - all in 2 weeks!

Without Mariela and Doris, of course, this would not have happened. They know all the families and children and they selected them based on need.

After I collected the donations, we planned the trip - and this is the summary of the first 'Proyecto Abrazos' visit to Santa Marta and Juan de Acosta. From now on, we will be handing out donations and organizing 'get-togethers' for the sponsored children twice a year - one in summer, and one right before Christmas. The goal is not only to give them things, but to get them together, plan activities they would not otherwise experience, make sure they are healthy, and educate them about HD. We want to watch them grow up strong, happy, hopeful and proud of who they are and where they come from!

This trip was - undoubtedly- the most rewarding trip of my life. Giving is wonderful - giving to children in need has no comparison to anything else. The happiness and love one experiences is hard to describe.

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You can watch a video of the trip made by Funcovulc here!!!

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Mariela and her colleagues from Funcovulc organized the first portion of the trip. In addition to the donations I raised, Mariela was able to secure some help from other local organizations. A church sponsored 2 additional kids, a bus was donated for the transport of the kids to Santa Marta and to take us around, and CajaMar, a local Santa Marta children-focused NGO, also donated food for the events. We put the children and their parents up at a hotel in Santa Marta for 3 nights, and several events were organized. These included spending 2 days at a center with soccer fields, several pools, and a restaurant. It was there we spent the first 2 days, and where a dentist, a doctor and a nutritionist evaluated the children. Even though most are healthy and doing well, aside from a few cases of cavities and skin conditions, all the kids are small for their size and underweight. The organization of the events was perfect, and the kids learned how to brush their teeth properly, had their teeth cleaned, their weight recorded and their health evaluated. Thank you to all these wonderful volunteer professionals who took time off to help us. During day 1, we also gave them the first donations from the sponsors. Their faces said it all - such happiness! School shoes, sandals, sneakers, clothes, food, toys, backpacks and other items for school.... these kids do not usually get gifts and they were beaming with excitement and gratitude. I quickly became 'Papa Nacho' and was surrounded with love. Few things in life compare to the feeling of helping a child in need.

Several of the mothers are already symptomatic - they were happy to see their kids so joyful. Most of the kids grow up without fathers, as they usually leave their wives to start a new family when they realize they are getting sick. It is sad to see and a reason why these families suffer so much.

Day 1 - gifts, dentist and play!

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Day 2 - beach, swimming pool and aquarium day.

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On day 1, a dentist volunteered her services to clean the teeth from all 24 children. Thank you so much for your kind help!!!

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on Day 2, a local doctor and nutritionist helped and checked the children for parasites. The kids were examined, weighed and measured, and given nutritional supplements and vitamins. Thank you to CajaMar por organizing this wonderful event with us!

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Some pictures of the sponsored kids from El Dificil, Juan de Acosta,  San Angel and Santa Marta- all wonderful human beings, they changed my life forever.

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Working together with the family associations, and their friends, we can make a difference.

We hope to be able to help many more children at risk for HD, and to host events like this twice a year. The next planned event is close to Christmas 2016. This year, all these children will have a very special Christmas, thanks to all the sponsors.

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Thank you, and don't forget that a little help goes a long way for these families and children. A small gift brings a huge smile and a sense of hope in life. We won't abandon these children. Their families just got a bit bigger!

During the last day, during sunset, we watched the beaches of Santa Marta and thought about all we had achieved.

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You can still donate and contribute to these efforts HERE. anything helps.

Thanks

nacho

Colombia April 2016 - Part 3: Stories from Juan de Acosta

After our excursion into San Angel and Santa Marta, we drove to Barranquilla, where I gave a lecture at the local University, to some graduate students in psychology. For the first time since I started to visit Huntington’s communities, I was getting a sense that more young professionals and students were interested in learning, both about the disease, the science and the welfare of the communities. Every medical institution or university I visited can be a starting point towards change. The change that can take place when people care. The context of poverty and neglect is not unusual for Colombia – many regions have been left aside by the Government and local institutions and the levels of poverty of many regions are indeed extreme. It is almost assumed that poverty is a condition that has no solution – and this disposition (although understandable) is very dangerous. Change is possible. Whenever I feel a sense of despair, I try to remember the words of Violeta Parra in “Todo Cambia” (“Everything changes”), a song that has become a bit of an anthem for me, given my voluntary exile from Spain and the many challenges life has thrown at me along the way. Challenges that always lead to change, and hopefully, to growth.

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Barranquilla is close to Juan de Acosta, the second largest cluster of HD patients in the world (to our knowledge). The prevalence was reported quite a few years ago by Dr. Daza in one of the few published works describing the prevalence of HD in Colombia. I had met Dr. Daza in 2013 when I first visited Juan de Acosta. He then held a meeting where I spoke about my scientific work in front of a few other local physicians and a number of patients. What I remember from that meeting was the familiar tension I felt in Maracaibo, due to the frustration of the patients at not being able to access the genetic test, even though they had donated blood in order for Dr. Daza to estimate the prevalence. Given that these studies were for research purposes, Dr. Daza could not provide the results back to the individuals who participated in the study. Clearly, when I visited, they still wanted the results. They simply did not understand (or did not accept) the fact that they could not access them. This is a recurring observation and made me think about whether consent forms in these populations are ever truly consented. Unfortunately, Dr. Daza was murdered in 2015 due to retribution for his brother’s political decisions, I am told. This ended a period of relative care for the Juan de Acosta community. Dr. Daza, according to Doris Echeverria, the president of the local association and the visible voice of this large community, was very caring. He would visit the patients regularly in their homes, and would play the guitar and sing to them. Apparently he was a very good musician.

Doris and I started off with difficulties, after my first visit in 2013. She did not know me well, and was upset about how I handled certain things via AcolpEH, the only organization with whom I was working then. I made mistakes in how I tried to communicate with the patients, some of whom are her relatives. She’ s herself at risk, her father has been suffering with HD for 20 years, and she has seen so many relatives die of HD, including young nephews and nieces, uncles and aunts, siblings. It was only now, after this trip, that I began to understand why she had been so frustrated, protective of them, and angry. I would be too, if I had seen so many of my loved ones die without being able to get them adequate help. During the trip, I think we began to understand each other – she started to believe I was a caring person who wanted to help. I hope never to cause unwanted harm to the patients. Sometimes this can happen as they are used to people coming and leaving. Sometimes the news portrays them in ways that make them feel worse, as if they are ‘cursed’. They are not cursed, they have a disease, and deserve help and compassion. One learns so much from just watching and listening.

During the day in Juan de Acosta, we started the visit with a “town hall’ meeting, and we spoke about HD and our work. About 40-50 people attended and listened intensely to what we had to say. The local hospital is new and adequate; however, they lack a local specialist. Part of the work we need to do is to train local health care professionals there. Some psychologists and nutritionists from Barraqnuilla came, and we hope together we can begin to educate both the professionals and the families about the multiple aspects of the disease. Particularly, young people need help coping with their family situation, and their own status at-risk to develop HD. A local council member spoke about trying to pass legislation to protect them. In spite of his good words, tension exists between the local politicians and the families. A lot of words and little concrete action fuels resentment here.

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After the meeting, we spent a few hours relaxing by the ocean and having a wonderful seafood meal. This region is well known for its nice sandy beaches and tropical climate. It was a nice way to connect with the local association, Doris and her relatives, who took us around to see affected families here. We visited about 8-9 families, and delivered donations to them. This time, besides Dara the journalist from The Guardian, a photographer (Nick) came from Miami to shoot some of the patients and their families (see The Standard article here). Also, Roger Cachope, a Colombian physician scientist who works with me at CHDI, and Dr. Gustavo Barrios, a neurologist from Bogota, came with us. Up and down the hills of Juan de Acosta, across fields, we visited this town where so many patients live and so many have already left to escape the social alienation that many have felt. They disperse and probably start new areas of Huntington’s throughout Colombia.

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Doris’ father was also her idol. For her he was a figure of love and strength. She told us stories of her childhood, and how the disease affected her immediate family and the entire town. How people would leave their wives when they started having symptoms, how people would be shunned and kept behind the houses, how one of her relatives burned herself alive… the stories go on. When we visited her home, we saw her father – he was in a terminal stage and in poor condition. Doris’ mum cried when we were there. 20 years of struggling with the disease at home is very hard. It was obvious he was always loved by his family. My admiration for these families is sincere. We have lots to learn from the true sense of commitment, care and love that these women (and they are mostly women) show towards the patients.

A week after we left Juan de Acosta, Doris’ father died. Factor-H covered some of the funeral expenses. Our condolences go to her family.

Delivering the donations took us well into the evening. You can read more about the stories and see some of the images in The Guardian article.I am only posting one pic of an HD patient and his family. He makes a living by selling eggs by the highway. Doris and her aunt told me this is what they also used to do to help their family, as Doris' father became ill in his 30s. Doris grew up fast, taking care of her sisters and her father, while putting herself through school, university and post-graduate school. In this picture, you see Nick taking some of the pictures that would then appear in The Guardian article. While the families were hesitant at first, thanks to Doris we were able to get them to agree to pose for the article, and sign the consent forms. I am bringing them back framed pictures.

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Below I list some notes I took from this day.

Beltran is a 6-six year old kid, a friend of the Echeverria family. As we were driving around to find patients, Doris asked him to jump in the van and help us find Jose’s house. Beltran is friends with Jose’s middle son, who is also 6. Beltran is a small child, his skin dark from being outside all the time, and was wearing a Colombian national football team t-shirt, dirty. His hair was short, cropped and unkempt. He was extraordinarily cute. He would wave his hand at the driver to let him know he ‘needed to keep going’. When we gave him a chocolate bar, he stopped directing the driver and we almost passed the dirt road up the hill where Jose leaves with his children.

Jose is 34, a father of 3 (a girl of 13, a boy of 6 and a baby girl of 2). He started showing symptoms 2 years ago, just about the time his wife had the youngest baby girl. He is educated, handsome, and smart, and his chorea is now very evident, both in his legs, hands, and arms. He suffers from facial dystonia, although he is very articulate. He is an angry person now. He lost his job and now stays at home taking care of the kids. His wife finds odd jobs in Barranquilla (about an hour’s drive) and has to leave home so they can afford to eat. Jose went through a serious depression after he lost his job. He feels he cannot contribute to his children’s welfare. He described being unable to pay for the school needs. He cried when describing that he is going crazy trying to find medication for his chorea. He has been waiting 6 months now to access tetrabenazine (TBZ) which would manage his movements for the time being. The price of TBZ in Colombia is about $400 month, and during our travels it’s become obvious that many patients cannot afford it or easily obtain it from the government (as it is not a list of ‘essential medications’). This is a real issue, particularly for the (many) patients who live in remote rural areas, with no easy access to a medical center and no access to transportation. Without being able to get to designated places, they can’t access the medicines, and without them, they are doomed to a life of misfortune and abandonment. Even if the existing medications are merely symptomatic, I have seen they make a real difference to them. Beyond the symptomatic effects, they do afford them with a sense of hope, with a sense that they are being treated. As Doris said earlier in the day, tetrabenazine changed her father’s life early on in the disease course ‘because he could give us hugs again and be held without all the movements”. This is something I will never forget, and will never say that TBZ is not a good drug.

For some, it offers real benefits, and not only from a physical perspective.

I finally understood that benefits to the patients and the families come from unexpected places, one that we cannot understand unless we learn from their experience. Nothing in the medical or scientific literature would ever inform us of this wonderful effect of TBZ.

Jose did not want to answer any questions when our colleagues from The Guardian asked to speak to him. He said he would talk to doctors, but not to journalists. He is ashamed of his condition, of his sense of dependency, of being watched by his neighbors. His house is in a small dirt road, filled with stones going up the hill. The houses are built on both sides of the road, merely 9 feet apart. There is no escaping the neighbors’ gaze when stumbling up and down the hill, navigating around the stones. He does not have any transportation, so using the many motorbike ‘taxis’ around is the only way for him to reach his destinations. We brought him some food and cleaning supplies with the money I was able to raise from donations. It was not much; it won’t change his life in any significant manner. When speaking to him and holding his hand, he seemed to get calmer. He needs anxiolytic medication. He needs more hope and support that we can now provide.

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After we finished out visit to Jose, Beltran waved at me to come to the van. He was very insistent.

I walked over, wondering what he wanted. He whispered in my ear if I could give him something that was in the bags with food that we were delivering to the families. He was pointing to a roll of toilet paper. I was surprised and pointed at it in disbelief. Is this what you want? He nodded and smiled. I gave it to him. He hugged me and gave me a long kiss in my cheek, and run away to his house. I was saddened, that a 6-year old child’s mind is focused on getting toilet paper (and not food) says a lot about his living conditions. These things break my heart. He later came back and asked me when I would return. I told him I promised I would return.

I hope I can keep those promises and I help see him grow into a stable, happy man.

Roberto used to work picking stones from the river next to his house. A house that gets flooded every year because that same river overflows during the rainy period. Many Colombian towns and cities have been expanding with little urban planning. The differences between the rainy and dry seasons lead to frequent floods. For impoverished people, this is disastrous as they can easily lose everything in one flood. When one combines this with the fact that patients have difficulties walking (and eventually can’t be mobile at all), one can see the gravity of the situation. Roberto came to hear us at the local hospital earlier in the day. I sat next to him during the entire morning. He has early stage HD, without much chorea but with facial dystonia and has difficulties walking. He speaks little, but smiles often. He is a very handsome man, dark skin and hair, gentle face. He reminded our friend Dara (the Guardian journalist) of a Bob Marley with short hair. He smiled when he was told and said that people had told him before too. His wife and two kids (ages 16 and 13 I think) allowed us to take family photographs. Initially they were serious and nervous. They are not used to being watched and photographed. I yelled at them that they should smile, that they were a wonderfully handsome family. They did. And the portraits were beautiful and inspiring.

We will send them frame pictures. I believe they will look at them in the years to come and will smile. Roberto will not look like this for much longer – the disease will change his facial features and his muscular build. But they will always have this photographs to remind them how handsome and kind their father was.

Colombia Trip April 2016 - Part 2

When we finally got our flight to Bogota from Quibdo, it was late at night. the plane was delayed and we did not take off until after 9pm. we landed around 11pm and we had to be back at the airport at 8am for the flight to Santa Marta. At the beginning of the trip, we barely slept more than 4-5 hours a night. In Santa Marta, we were greeted by our collaborator Mariela Campo, the President of Funcovulc (click here for their website), one of the local patient associations working in the Magdalena State, a province in Colombia that now holds the largest number of HD families. Its really hard to know just how many people there are affected by HD, as a proper census has never been conducted. Initially, the Juan de Acosta township in The Atlantico province was known as the second largest cluster in the world after Maracaibo, with an incidence of 4.3 per 1000 people affected, based on the work of neurologist Dr. Daza a few years back. However, due to discrimination and social neglect, many families from Juan de Acosta are thought to have left and have started to take wiht them HD to other parts of the country. We dont know if the hundreds of affected families in Magdalena State originated in Juan de Acosta or even are of Venezuelan descent. What we do know, however, is that every month new cases appear. The majority of families affected know by word of mouth that the patient associations want to help, so they get in touch with them. sometimes it is the associations who hear that someone here or there might have HD, and go to visit them. Not all families are confirmed HD families, as access to the test is difficult in these rural areas (no easy access to hospitals, no local neurologists, and no genetic counselors make this almost impossible). But it is suspected given the large family relationships in the area and the fact that some distant relatives have confirmed HD. In any case,  Funcovulc  has almost 600 families registered. only a fraction of those are known to government or medical institutions.

Santa Marta is in the Atlantico province, in the Caribbean sea, and is a city full of music and palm trees. Santa Marta became our base for the next 48 hours, and we drove from there south to Sabanas de San Angel, one of poorest and more isolated places in Colombia. I had been there in 2013 and was shocked by the conditions of the families.This time around, it would not be any different. We left at 4am with a car packed with food, toys for the children and other things the families needed. Altogether, we visited 13 families and brought with us more than food and toys- we brought them information and a message of love and care. This day was probably one of the most significant days for me in my life. In spite of the misery and struggle, I felt alive and at peace with myself and the world. I was here to help. I was here to bring them a smile. and I saw many that day, and smiles in the faces of the children that i will never forget. Sometimes we undervalue how much a hug, a kiss and a smile can do for a person in need.

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The Sabanas de San Angel is an area devoid of any infrastructure, people live without fresh water, and many families lack electricity. Their houses, built from wood planks that don't fit well, have dirt floors, and currogated steel roofs that magnify the terrible heat in the long summer months. When it rains, the water leaks through the gaps and wholes found everywhere on the roof and walls of the house, and the houses flood. This is a real issue for HD families, as most do not have any furniture, and the patients lie on matts on the floor, or sleep in hammocks. As the houses flood, it becomes a real problem where to place the patients. This is real misery and talking to these families brings a strong sense of dispair, almost anger, at how abandoned they are.

How can we let sick people die in this kind of environment, without ever seeing a doctor, without food to eat, and no sanitation?

The San Angel region has become an epicenter for my social work. I will not leave them alone to die in oblivion.

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These pictures below are from a family living in extreme poverty. The wife takes care of her dying husband and her son, who suffers from juvenile HD. Her husband spends his days tied to a bed. He has been suffering with HD for 14 years. He has never been seen by a doctor. His body is emaciated, all bones and flesh. Here, his wife feeds him what she can. They have 2 kids together. Their daughter is unaffected and has a 2 year old daughter. Their son started having symptoms at 17. He is now 24 and can't speak any more. In spite of his rigidity, he goes to sell the 1 liter of milk they can obtain from their one cow. With that money, they can buy some food. Together with them, a 10 year old kid lives wiht them as well. He did not have any shoes and walked to school bare footed for an hour each way. I decided to sponsor him and bought him shoes and clothes after i left. It is while visiting this family that 2 projects emerged - the 'Project Abrazos' in which we are sponsoring 30 children living in HD families; and a project to build fresh water wells for the poorest of families. With water, they will grow vegetables for food and will have grass to feed their cows.

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We went around family to family bringing a variety of things they need - mostly food, clothes, sometimes hammocks and even a fan for one of the families who steals electricity from the street light close by. There are some wealthier neighbors (who own the land), so they can sometimes, with ingenuity, tap into electricity. I also brought from the USA a suitcase filled with toys for the kids... stuffed animals, pencils, crayons, metal cars, marbles and candy. Their smiles made me temporarily forget what i was witnessing.

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The landscape in San Angel is also hauntingly beautiful in spite of the drought. In certain areas, yellow-leaves Cañahuete trees brightened the dry soil under the blue skies. It was a sight to see. The trees are magnificent here and I can only imagine when the rain comes how beautiful the landscape becomes.

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We left San Angel and delivered more donations to other families in the area, and even visited some of the people I had met last time I was here in 2013. Slowly, we are building long-lasting relationships with these families. some of them remembered me, and we talked about their lives, my hopes, and their children. after 10 pm we finally made it back to Santa Marta- it had been a day filled with emotions, and the beer we had when we got back to the hotel was one of the best beers i have ever had! Dara and I enjoyed ourselves in the midst of the music and the drinks at the bars - tourists and locals oblivious to the reality that permeates this land, just a few miles away in the country side. Such is life.

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The second day, we continued to visit some families and also we met with officials at the local secretary of health. There we begun to understand part of the problem. No one really wants to deal with these patients. They dont have the knowledge and lack any interest to help. We heard worrysome comments like 'everyone including all the kids should be forcibly tested- so that the government can know where they are and ensure they do not have any more kids'. This is not news in many of these places - eugenic tendencies abound, and their rights must be carefully protected. There is a lot we can do to educate the institutions. These statements are not just words - we found out that in San Angel, last year, government officials came unannounced and tested everyone in many of the families we visited. Including children and infants. These government workers came from the National Institutes of Health, entered data in the computers, told them they would deliver the test results (which they knew they cannot do) and left. They never heard from them again. These types if issues one only finds out when visiting- and these are important facts that help us develop a plan of action to ensure national and local institutions understand the rights of these families and act to protect them, rather than violate them.

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New campaign to sponsor kids growing up in needy HD families in Colombia

Today we started a new campaign to help children living with HD in Colombia. see attached link please and spread the word! to Donate, please click here for Project Abrazos for HD

also see an explanation of the program.

Thank you and I hope that together we can help these children grow up with a sense of hope and dignity. Their life is ahead of them and we can make them grow up healthy and proud!

Click on this link to see the brochure: Project_Children_Colombia_May2016

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Choco, Colombia, April 11-12. PART 1 of our Colombian Visit

  Our first leg of the trip to see HD families took us to a place I had never been before. Choco is an area of Colombia bordering Panama on the North and the Amazonian region in the South. Choco has borders with both the Pacific and the Atlantic oceans, and is one of the wettest areas in the world. The rainforest and swelling rivers extend what seems like infinity. Choco is also one of the poorest regions of Colombia, and is populated mostly by native Indians and people of African descent. During the trip they told me that this region is so African because former slaves would hide here in the jungles as they escaped. The region is dotted with small villages of a few houses standing on stilts along the river. This area is poor and has been battered by guerrilla and narco conflicts for a very long time. As we landed in Choco from Bogota, immediately we felt we had arrived in a place significantly different from the rest of the Colombia we knew.

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I was accompanied by Janeth Mosquera from AcolpEH (who was contacted by the HD families living there), Dara Mohammadi, a journalist from The Guardian newspaper from London, and by Sonia Moreno, a neuropsychologist from Medellin, who works at the University of Antioquia and who has helped many patients and their families in Medellin. Sonia is trying to put together the history of HD in this region, and she comes prepared with pencil and paper, trying to trace back the large family tree of the few patients we have identified. So far, we know there are 6 symptomatic patients in this general area, all from a large family. Turned out later that Sonia was able to find out the family probably arrived to Choco from Antioquia, explaining the descent of the disease across the region. By the end of the trip, we knew of new patients but we were unable this time to see them.

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Dara Mohammadi is writing an article for The Guardian on the social and scientific aspects of HD. He is standing next to Janeth from AcolpEH, on our plane to Choco. The flight was delayed 3 hours because of the rain in Quibdo. In spite of getting to the airport at 5am – we did not leave until 9am.

 

How many other large HD families are here? How many abandoned people suffering slowly from the disease that the world does not know anything about?

The trip to Choco allowed me to know the family and the patients personally. We have been providing food for them this year, along with other things they need for their care, such as diapers, sheets, towels, etc. Soon we realized that no one other than ourselves had ever come to see them. The patients have been living with HD without any outside help, medical or otherwise. They are not medicated. They are isolated from the rest of the world, as it’s hard to transport them to see a medical center.

The capital of Choco is Quibdo, which is about a 3-hr boat ride in the river Atrato, one of the largest and fast-flowing rivers in South America. The ride to the town of Bojaya, whether some of the patients live, was an adventure. We were tightly packed along with two dozen people and spent three hours heading up the river, often times getting soaked in the rain, and going past small villages and houses on stilts along the river banks. The Army soldiers who patrol the river also stopped us. Standing with AK47s on their boat, it was hard not to be intimidated. We had given our names to the Army and police prior to arriving – as often times people can be kidnapped for ransoms. We did not encounter any problems but it’s easy to see how things can turn very complicated here. Access is impossible other than by boat or air – there are not many roads within the jungle. If something happens, it’s hard to make it to a city. These thoughts kept going through my mind as we visited the patients.

How do we get medical help here?

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The view from the river – endless water and trees.

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The small villages of painted houses – some decaying, some fallen on the river- that dot the landscape up the river Atrato to Bojaya, our destination.

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The Army boat. Standing above us with AK47s, the young men of the military looked menacing. They told us is good news to see them as they keep the river safe.

After 3 hours on the boat and pretty wet from the rain and the river, we arrived at our destination – the town of Bojaya. Children were swimming in the river, their mothers washing the clothes alongside, and the men working by bringing bananas and other fruits into the town. Our hotel – the ‘hotel Dubai’- was built a few years back by the previous major of the town. It was strange to find a little hotel (8 rooms) in the middle of this place. The lights went off in the entire town around 6pm.  People looked at us incredulous that we were there – the kids as they went to play football would smile. We ate fried plantains, chicken or fish from the river at the only restaurant in town for every meal.

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Our hotel – the hotel Dubai. Thankfully with the 96% deet mosquito spray we did not get bitten. This area is endemic for malaria, dengue, yellow fever and Zika. Hot and wet, it’s a perfect climate for mosquitoes. On our way back to Quibdo, we run into a mother and child sick with malaria. She did not look good. I gave her a pink stuffed panther – she smiled and I took her with me to give her mother a rest. These moments will be with me forever.

 

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One of the patients living with HD, with his cousin who organized our trip.  What a wonderful family. We brought them a donation and spoke to them. The patient wanted us to see his house, down the street, as he still lives alone. He was always smiling and could converse well.

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Janeth giving him our donation – sheets, towels, food, and care! We will be back – they wont be forgotten.

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Second patient with his mother. Her husband died of HD as well. He has been symptomatic for 14 years, and his movements were terrible. He does not have medication. His younger sister is beginning to show symptoms. The mum complained that she cannot longer lift him and bathing him has become nearly impossible. They need help.

After we visited the families, Sonia agreed to have someone from Medellin come to Quibdo to look at the patients, as some of them won’t be able to fly to the hospital. The local hospital in Quibdo does not have a neurologist, so accessing the medication will be hard unless they can travel to Medellin or someone can come to see them. Without a neurologist prescribing the medication, they won’t have access to them. We need to think of ways to ensure we can provide assistance.

After about 2 hours in Bojaya, we had to come back to Quibdo to see more families and to fly out to Bogota. The ride back was eventful – the engine broke down in the middle of the river and we ended up stranded for more than 2 hours in a small village, until we were picked up again by another boat. Altogether the ride took over 6 hours – so we had to go directly to the airport to catch our flight. We missed the opportunity to see the other families in Quibdo, but we will be back! Overall, it was an experience we will not forget.

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Life is tough in this part of the world!!

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The town of Bojaya – we visited a family here. The town has received money recently after 100 people were murdered in a church by the guerrillas a few years ago. The government is giving back to the people they failed to protect by improving the town.

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Sonia, Janeth and our guide/friend stranded after our boat engine broke down. We spent 2.5 hours waiting to be picked up and taken back to Quibdo. Because of this, we could not meet 2 additional families, as we were late for the flight back to Bogota to continue our trip.

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  Its almost time to visit Colombia!

Here is the link to the meeting we will be participating it at the end of the 2 week trip to visit the Colombian Communities.

I hope we will have a positive impact for the patients, their families, the physicians and the regulatory authorities. The beginning of Enroll-HD will mark a momentous period for the Colombian HD research and clinical communities, and all affected families.

Stay tuned!

nacho

 

Nature publication speaking out for the benefit of HD communities in Latin America

I was able to get an opinion piece in the prestigious scientific journal Nature. I hope this piece might be the beginning of a renewed conversation about how to help these communities. Here is the link: Nature article

Enjoy

nacho

Venezuelan communities in Maracaibo need HELP

The situation in Venezuela is dire. Our local physicians are leaving the country if they can, as it is becoming increasingly difficult to live there. They cannot provide medications for their patients. Getting basic amenities and food is getting harder. The situation in Maracaibo is frankly terrible - I have been told that in Barranquitas, most people only get to eat once a day, if at all. This is the place with the largest numbers of people in the world living with HD. And they have no food, no medications, and very little support. If you are able to help somehow (you live in Latin America or can access Venezuela), please HELP. We tried to direct money and good there but it has been impossible so far. Sending food and clothes from Colombia was also impossible due to the closure of the border a few months ago. If there is anything anyone can do, please get in touch. Thanks

nacho

Upcoming visit to Colombia in April

Our next trip to visit our Colombian friends and HD family is happening soon- from April 10-24, 2016. We are planning on going to Choco, Santa Marta, Juan de Acosta, Barranquilla, Medellin and Bogota. This time around, our friend and English journalist Dara Mohammadi (see his page!) from the prestigious newspaper The Guardian, will be joining us during the entire time. His objective is to write an article about the conditions of HD fsamilies worldwide. This is the first time I am bringing someone from the media to document the realities of these families. It will be an exciting- although exhausting- adventure!.

Recently, we have identified through AcolpEH several families affected with HD in Choco (see map). We have been provided assistance to these families who live in a rather remote region of Colombia, close to the border with Panama. We will be visiting them for the first time accompanied by Janeth Mosquera from AcolpEH. We are also in contact with Habitat for Humanity as they have extensive projects in this region of Colombia, to see if they can help with their housing situation. Below are a few pics of the families we are helping.

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After Choco, we will visit Santa Marta and San Angel with our dear friend Mariela from Funcovulc, where we will be meeting with people from the Ministry of Health. There are more and more families being reported in this region of the Atlantico province. After Santa Marta we will be heading to Barranquilla, where my colleagues Drs. Claudia Perandones and Roger Cachope will join us. This part of the trip is partially of a social nature, and partially professional, as we are trying to engage leading clinical institutions in Colombia as part of the global platform called Enroll-HD (see here). Through the medical centers in Bogota and Medellin, we hope to reach out to many families in other parts of the country. We hope this will improve their care significantly. We have meetings set up with local neurologists and government agencies. Together I am certain we will make a difference.

I will keep updating the site with information about our upcoming trip!

Take care

n

Campaign 'de Abrazos' - 'Hugs' to benefit the Colombian patients. Go to you tube and donate!

AcolpEH just launched a new campaign called 'Hugs' - to raise funding towards the benefit of Colombian families, as well as to start fundraising to build a care center for the affected families https://www.youtube.com/watch?v=wABsvfEPT2E

Please go and donate- right now the video is in Spanish but translation will come soon

n

AcolpEH launches a video thanking Factor-H commitment to Colombian HD families

AcolpEH, the national HD patient association based in Bogota has been working with Factor-H for a few years in trying to develop aid programs to benefit the many affected families in Colombia. Based in Bogota, AcolpEH's founder Janeth Mosquera issued a video recently where several of the families who received aid on behalf of Factor-H thank us for our work. This type of videos are very inspirational for us all, and make us stronger in our commitment to social justice and to improve the quality of life of these families. In the videos you will see some families from el Choco, in western Colombia, a recently discovered focus of HD, completely unknown to the medical professionals. Link here for the video! (in Spanish but soon to be shown in English!)

Thank you Janeth and AcolpEH for your support, and for believing that together we can make a difference!

nacho

 

Donations for the Colombian patients

in 2015, we were able to raise US $20,000 in donations from pharmaceutical companies, which is being allocated to a variety of projects in Colombia. The goal is to help the neediest families as well as invest in longer term projects, such as the creation of an audio-visual guide to show families how best to care for the patients. Together with Janeth Mosquera from AcolpEH, we are making progress in helping several families from Medellin, Bogota, Choco and Juan de Acosta. We will update of the status as we collect more information. I wanted to thank the following companies which donated money for our work this year:

  • Pfizer
  • Evotec
  • IRBM
  • Lundbeck
  • Auspex

from all the Colombian patients- a big THANK YOU for your support.

nacho

Visit to Cetram and the day care center in Santiago, Chile

Claudia and I just returned from a wonderful trip to Santiago de Chile. We spoke about our work in Enroll-HD (together with Cristina Sampaio and Joe Giuliano from CHDI and Bernhard Landwehrmeyer from Ulm) and the current therapeutic strategies. Cetram is a wonderful center for movement disorders, headed by Dr. Pedro Chana. Right now, Cetram (www.cetram.org) is the leading recruiting site for Enroll-HD in Latin America. In addition to the excellent neurologic care they provide, Pedro together with his wife Daniela Alburquerque, an occupational therapist, and our friend Rodrigo Osorio (President of the Chilean society for HD; http://www.huntington.cl/) opened a day center for the care of HD patients. Approximately 25 people attend every day, and they conduct lots of excellent activities for them... far from being a place where patients feel their sickness, the center gives them a safe place to regain their identity and find comfort. The activities include gardening, martial arts, speech therapy, helping prepare food, sell the crafs they make, etc. I believe this center should be a model for other places around the world. The center is located next to Cetram, and the proximity to the medical teams makes things easier for the caregivers and the patients themselves. They also familiarize themselves with the nurses, psyhoclogists and physicians, and develop a much closer realtionship. This center tries to apply a holistic approach to the treatment of HD, and to help people regain their dignity and a stronger sense of belonging and independece. A wonderful achievement by terrific people who care deeply for the families affected by HD. It was a privilege to spend time with them.

nacho

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Huntington's Month in Argentina - and a concert to celebrate it!

Claudia has managed to stage an impressive array of meetings during the month of May to celebrate the people affected by Huntington's disease in Argentina.

Part of this calendar of activities include a symposium to expose the social and medical issues affecting people suffering from HD. Both Claudia and I, as well as several international speakers, will be giving seminars on various aspects of the disease.

The symposium is called "II Jornada Internacional de Huntington's disease". Please try to attend, as the symposium is open to all at no cost!

You can find the brochure here!

There will also be a great fundraising concert by the great Argentinian singer LEON GIECO, and hosted by famous actor LITO CRUZ.

Both have agreed to help Factor-H and the Argentinian people affected by Huntington's. This will be a unique event, and one that we hope you might be able to enjoy if you are in Buenos Aires on May 22, 2015.

The concert is FREE

A great THANK YOU to Claudia for pulling this off, and to LEON and LITO for their humanity and their willingness to help the Argentinian patients.

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