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 […]

PLEASE DONATE TO HABITAT FOR HUMANITY HD PROJECT IN COLOMBIA!

  NOV 06 2013 PLEASE CONSIDER MAKING A DONATION. Habitat for humanity and Factor-H, my other ‘job’, started a collaboration together with the Colombian family association (AcolpEH), to raise funds for patients living in suboptimal conditions in Colombia. Find the link here: http://share.habitat.org/fighting-huntingtons We are very behind, and we need your help. So if you […]

Pfizer’s PDE10 inhibitor enters clinical trials for HD

Pfizer’s PDE10 inhibitor enters clinical trials for HD JUN16 2013 This is a good year for HD, and for all working to develop medicines to treat all those affected. For the first time in CHDI’s existence, a clinical trial with a new drug entity will start this month. The collaboration between CHDI and Pfizer began […]

The importance of biomarkers

As I have described before, the age of molecular therapies for the treatment of HD is around the corner. But a critical component of the drug development process is still lacking: the identification of Htt-dependent biomarkers. Why is this important? Imagine what will happen over the next 1-3 years. Several of the molecular therapeutics aimed […]

New center opens in Santiago!

Dear all- today marks a historic day in the solidarity with the patients and their families in Chile and in all of Latinamerica- the Chilean HD association together with its collaborators have inugurated a center for the care of people affected with HD. Claudia Perandones attended the opening ceremony in Santiago. Rodrigo Osorio, the president […]

Molecular therapies for HD – Ready, Set and GO!

Huntingtin targeting therapeutics are entering the clinical realm… after many years of work, 4 big players in the biotech/pharmaceutical industry are planning clinical trials in HD. Recently you might have heard about Roche, the Swiss pharmaceutical giant, acquiring the rights to develop ISIS’s lead antisense molecule to lower HTT expression in clinical studies. This represented […]

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 […]

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 […]

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. 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 […]