Letter from the President

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2020 was a year like no other.

The global Covid-19 pandemic impacted the entire world, but it has taken a heavy toll on poor communities around the world. Most of the families we assist live in vulnerable conditions, and their access to employment and medical assistance were significantly impacted.  We reacted to these challenges by organizing a large campaign to assist our communities. More than 400 families were received food, masks and disinfectants monthly for most of 2020. Overall, 2000 family members were aided through our program. We also instituted online educational campaigns as well as via our social agents. An emergency program ensured access to medication and transportation to medical centers. A telemedicine program was established to hold medical consultations. The real toll of the pandemic in these communities has been very high. The food assistance program allowed families to survive. The kids had to learn remotely, and many suffered significant delays in attending school. In Maracaibo, we started a small school for 12 of the most vulnerable children, who received daily classes in socially distanced conditions in Barranquitas. With grants from the Rainwater and the MJB Foundation, we expanded the number of at-risk children receiving assistance through our Abrazos program to 157 between Colombia and Venezuela. We worked with illustrator Matt Rota to create images to commemorate the 5th year anniversary. 

Factor-H has continued to grow and deliver on our objectives. We experienced an increase in donations, and we initiated a grant application initiative to areas outside of health. The traffic to the Factor-H website increased by 50% in 2020 and we added 5.5k new visitors. With increased donations, we were able to hire two additional social agents in Colombia, and we extended our programs to help the Peruvian HD association and to Avehun, the largest Venezuelan association.  We also added new Factor-H members, grants manager Oxana Lavrova and movement disorder specialist, Dr. Adys Mendiazabal.

We published 20 blog and news articles and gave seminars in the United States and Colombia. I gave the annual “Insights of the Year” conference for the Huntington Study Group (HSG). The Dancing at the Vatican documentary was made available freely on YouTube and has more than 20k views. 

Roche financed a year-long project whose objective is to generate an evidence-based disease management clinical consensus for the treatment of HD. The first meeting was attended by 40 HD leaders from most Latin American countries, from Mexico to Argentina. 

Finally, Factor-H has undergone a strategic review and has developed a 5-year growth plan. We have defined 4 key areas of work: Health & Disease Management, Youth, Community Development, and Data Collection & Advocacy. We have redefined our mission and vision, and are establishing a road map for each area, in collaboration with a large team of institutions and consultants. We established new agreements in Colombia with University of Antioquia Universidad Metropolitana, and Area Andina. In Venezuela, we strengthened our relationship with local institutions, and are now assisting all 3 patient associations in the country. Finally, we extended our area of work to Perú and begun formally to assist families in the Cañete region.

None of this would be possible without the generous contributions of institutions and individuals who have financed these programs. Thank you. Let’s work together to make the world a more equitable and hopeful place for those living in conditions of vulnerability.

Nacho

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