It is now 9:52pm in Los Angeles and it is officially my birthday in Spain. I was born at 8am on the 8th January of 1972 – 49 years ago today.
As I write this, life is the USA is very complicated – we have had an attack on democratic institutions and the Covid epidemic is rampant in Los Angeles: roughly one person dies every 15 minutes.
Lets reflect on this for a second.
This is a life being lost- a life with a history, with loved ones, with a future and a past, with something to offer to others. This is a real tragedy.
A new year is always a moment of reflection – of things past, of another year gone by, but also of the exciting prospects of a new year, of experiences and accomplishments. What are my wishes for this year?
First – to see my loved ones, friends and family. In the 32 years I have been away from Spain, this is the longest period without seeing them.
Second – to return to Latin America and see my friends, young and old, for whom I work.
We just completed the 5th anniversary of our kids project and I remember very clearly the moment when I, alone, tried to help one child (Eduardo) lead a better life.
Now, it is 157 kids at risk for HD that we are helping between Colombia and Venezuela. This is an incredible achievement, and one that is possible thanks to the people who have believed in me, in us, and who genuinely want to help others have a better chance in life.
Well, we have done it.
I know these kids very well, at least the ones in Colombia, whom I have followed closely for 5 years and whom I have visited every few months. I am truly proud of what we have accomplished here. I have laughed and cried with them and for them. Starting this weekend, we will be posting some amazing illustrations and pictures of the kids and the experiences we have shared together. Please remember, we cannot do this alone. We need continued support.
The 2021 year has started being very rocky. It will get better as the vaccine distribution gets underway. We will be able to travel again and resume our normal work in Latin America. I will again hold these kids and share moments together. They really are my extended family.
On the science front, things are looking bright. Lots of excitement and progress. One of the clinical programs will be approved in the next few (and I mean few) years, and we will have a new drug or drugs for HD.
The key goal for us at Factor-H is to ensure everyone, regardless of location or income, gets access to them. Rest assured this is a critical part of our mission. We are already engaged in discussions to be prepared when the time comes.
In December 2020, we started a wonderful project to generate an evidence-based clinical consensus for the treatment of HD for Latin America. Following the GRADE methodology, and financed by Roche, we started this journey together: 38 HD professionals, from all over Latin America, met to plan our joint work. This group, which will be expanded as we mature, will form the basis of a team who will work to ensure every person affected with HD has adequate treatment and assistance.
With your help, we can do this.
Remember, behind every person there is a life history – love and pain and learnings and family. Let’s not forget that. Lets put behind numbers and remember faces and names.
Happy New Year – lets make this a fantastic one, together.