Venezuela News

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

2016-10-26-photo-00000092
2016-10-26-photo-00000092
2016-10-26-photo-00000098-1
2016-10-26-photo-00000098-1
2016-10-26-photo-00000096-1
2016-10-26-photo-00000096-1
2016-10-26-photo-00000101
2016-10-26-photo-00000101
2016-10-26-photo-00000122
2016-10-26-photo-00000122
2016-10-26-photo-00000121
2016-10-26-photo-00000121

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

IMG_2777

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

Factor-H delivers clothes to San Luis neighborhood in Maracaibo, Venezuela

Last week, Claudia and I from Factor-H, together with the Venezuelan physicians and patient association (Avehun), we spent a day visiting the neighborhood of San Luis, outside Maracaibo. We hand-delivered clothes donated by our US friends and colleagues, to about 50 people living with HD in their families. It was a day where at least we brought a smile and a bit of help to our Venezuelan friends living with HD. Factor-H also donated money to buy food. To all who helped Nacho gather the clothes, thank you very much, from Factor-H and from the patients!  

Delivering donated clothes in San Luis, Maracaibo.

Barranquitas, Maracaibo

  • Population: 6.264 in census – Regional Health System.
  • 76  HD families identified, 13 families with more than 1 member affected (total current HD manifest individuals = 98). A full census is ongoing through local patient association (Avenhun Zulia). estimated prevalence for at-risk individuals is 1-5% of the total population.
  • Needs:
    • Housing
    • Local hospice for general medical care
    • Social spaces for youth
    • Basic needs: Food, clothes, wheelchairs, diapers, etc.
    • Schooling programs
    • Microcredits

Barranquitas is approximately 4 hours by car from the city of Maracaibo. The roads are not paved during long stretches, and there is a lack of access to adequate medical care in this area. Most people live from fishing in the lake Maracaibo. Flooding is seasonal, and housing conditions are mostly inadequate.

Pictures below were taken during our visit in March 2013. We held a meeting with the local communities, to inform them of Factor-H and of recent advances in research to find treatments for Huntington's disease. The picture on the right shows an at-risk woman speaking out during our meeting.

 

Barranquitas

Barrio San Luis, Maracaibo

Barrio San Luis is a neighborhood in Maracaibo, Zulia. Of approximately 3100 people living here, 700 are at risk (23%). The prevalence is estimated to be extremely high, perhaps reaching 10% of all people living in this small and confined area near the city of Maracaibo. During our February/March 2013 visit we met with local caregivers and health workers. We visited a field where we could potentially help build a local hospice and youth center. Neither the local hospital nor the Casa Hogar (founded by Dr. Nancy Wexler) can accomodate all the patients suffering from HD. There is a great need for housing and medical care, in addition to basic needs. Many of the local youth suffer from discrimination, lack of social outlets, and proper professional training.

Pictures taken during our recent visit in March 2013. The picture (lower left panel) shows Dr. Claudia Perandones, Dr. Roberto Weiser, myself, Aleska Gonzalez (Avenhun), Dr. Olmedo Ferrer, and other members of Avenhun, bringing bags of food and basic essentials (soap, detergent, diapers) to some of the affected families.

San Luis

Venezuela Areas

Venezuela remains the country with the highest density of HD in a single location, in and around lake Maracaibo, in the province of Zulia.

Maracaibo

Factor-H is committed to helping the Venezuelan HD affected communities. The main communities in Venezuela with active Factor-H efforts are in Caracas, and in the Zulia communities of Barrio San Luis (Maracaibo) and in Barranquitas. Factor-H together with Venezuelan physicians and the patient association representatives visited the Zulia communities in March 2013. During this trip, we delivered food and aid to many affected families, and defined main areas of need for these communities. We also met with the local physicians at the Maracaibo University Hospital and the Hospital Barrio San Luis, and listened to their needs. Together we will work to bring better access to medicines, basic needs, and to build a better future for the newer generations living with HD.

We recently visited Maracaibo accompanied by the following physicians and patient association representatives:
  • Robert Weiser (Neurologist, Caracas, Enroll-HD)
  • Ernesto Solis (Geneticist, Maracaibo, Enroll-HD)
  • Olmedo Ferrer (Neurologist, Maracaibo, Enroll-HD)
  • Lennie Pineda Bernal (former president of Venezuelan genetics society)
  • Avenhun (Asociacion Venezolana de Huntington’s)
    • Aleska Gonzalez de Zambrano (president)
    • Avenhun Zulia representatives

Visiting Colombia and Venezuela

Claudia Perandones (Scientific Director of the Latinamerican network for HD) and myself will be visiting several of the affected communities in the upcoming days. We will visit some of the most devastated communities in Colombia and around lake Maracaibo in Venezula from february 23 through March 3, 2013. During this visit, we will speak to national and local physicians involved in the treatment of HD in these countries, as well as addressing directly the communities of affected members, their caregivers, and also speaking to local goivernment officials. This is the first time I will  be visiting the communities and I am very excited -and anxious- about the trip. We will leep people updated on our travels and what we learn! we will be discussing how we can work together and defining projects to get our work started in these countries. We plan on visiting Peru and Brazil sometime later in the year. In Colombia we have organized a meeting between the local associations, Factor-H, and Habitat for Humanity, to define ways of funding and carrying out projects to support housing infrastructure for affected members of the communities.

Thanks and take care

nacho