Argentina News

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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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

Brenda's story

Brenda’s Story - as told by Claudia Perandones from Buenos Aires, Argentina 20150109_125809-2 Brenda-con-Norma-1

 

I have a patient, called Daniel L., with Huntington’s disease, who is in a delicate condition because he can no longer move by himself and has to be fed by means of a gastrostomy tube. Daniel has a daughter, called Brenda, 13 years old, also affected with the disease, which to date has expressed symptoms of Tourette’s Syndrome.

Unfortunately, Daniel’s wife (Brenda’s mother) decided to abandon them many years ago, when Daniel’s disease became manifest. Both of them, Daniel and Brenda, are taken care of by Daniel’s sister. Her name is Norma and as you can imagine she is an amazing woman, taking care of her ailing mother, her brother and her niece affected by HD.

In this context, I decided to start arrangements for Norma to receive economic support, so that she could dedicate to see to her three ailing relatives more at ease, without going through so much economic hardship to feed them and purchase the medication they require. It’s worth pointing out that Norma takes very loving care of them, and they are always very clean, well dressed and fed.

The government decided to send a social worker to their home in order to determine the socio-environmental conditions in which they live, and to proceed to provide financial support. However, to my utter disbelief, in her report the social worker decided that it would be best to transfer Brenda to an institution for minors, arguing that in this way the aunt will have to take care of one less person.

Aunt Norma fervently opposed such recommendation, and I  also presented a rejection in writing, making a request for the social worker’s report to be set aside. Ignacio and I have decided to start a campaign to help Brenda through FACTOR-H, which is why we are telling this story. Brenda has the dream of having a room all of her own, given that she is currently sharing one with her grandmother and her father, both ill. She already dreams of a space where she could have her few dolls, and the photos of her idols; a place where she can listen and dance to her favorite music, forgetting at least for a while this terrible condition her whole family is enduring.

Fortunately, we are not alone. The people responsible for Fundación HD Lorena Scarafiocca have expressed their solidarity with this story, and decided to collaborate with us to help Brenda. They have decided to make a donation to start building her own room, but we still need materials and more economic resources.

If you are moved by this story and feel you can lend a hand, please do so by means of donating to:

Fundación HD Lorena Scarafiocca E-mail: fundacionhdlorena@gmail.com Web site: www.fundacionhd.org.ar Telephone: 011-4253-7120

Factor_H launches in Mendoza, Argentina

Official launch event for Factor-H in Mendoza, Argentina The official launch of Factor_H took place in the Sheraton hotel in Mendoza, Argentina, on October 12, 2012. The event included a seminar by Charles Sabine (see links here for youtube videos of his HD seminars; link), a friend and collaborator who flew from London to help us with this event. After Charles moving seminar about his life history with HD and the essential role of latin American families in the scientific efforts to identify the gene causative for HD, we turned to music as a way of celebrating both the beginnings of this long road called "Factor_H" and the wonderful community of everyone touched by HD. The very special, generous, and talented Tango company (BAS Pasion de Tango) came from Buenos Aires to perform one of their latest shows, for the HD community who arrived from Argentina, Chile, Peru, Colombia, Venezuela, and Uruguay.

A million "Thank Yous" to all the dancers and signer, and to the artistic director, Jorge Sergiani, a wonderful and kind human being. The Tango show was an incredible performance, and one that honors our host country of Argentina. Their perfomance was their gift to us and to the community, and it inspires all of us to donate whatever we can to help this noble effort! Special thanks to Claudia for helping with the organization of the event, and to the Sheraton who accommodated us in a very short amount of time so that the show could go on!

For me it was a very special moment, and I felt that we managed to instill a lot of optimism to all those who came from far away to be with us, learn about what we are doing, and start getting organized in crafting proposals for development projects in the affected communities.

So now Factor_H is a reality! Hope you will join us and help us in our quest!

nacho