Genetic Alliance 2011 – Washington DC

 In External conferences Genetic Alliance

Genetic Alliance 2011 – Washington DC

Report Genetic Alliance 2011 – Washington DC

External conferences

Francis Collins

On behalf of our association, Lex attended the annual Genetic Alliance conference in Washington DC.

They are celebrating their 25th anniversary and the CEO, Sharon Terry, has built a huge global network which we can also use to open doors that would otherwise remain closed.

Lex had again taken along some Dutch specialities which were eaten quickly and with great appreciation! Dutch biscuits, waffles, chocolate, liquorice, etc. are still for many non-Dutch very special. The “veterans” asked me at the door if I’d brought goodies with me.

Lex participated in the ‘transformational leadership” workshop which discussed how you as a person can increase your personal leadership effectiveness.

Gene Early was again the leader of the workshop. Gene is very experienced at holding such intensive workshops and recognizing group dynamics and their influence. In the introduction that morning Sharon Terry gave a beautiful description of an innovator.

In her opinion, an innovator is someone who is particularly annoyed by procedures/processes and goes his/her own way.

Gene came up with some characteristics of a “transformational leader”:

  1. A role model in his/her environment.
  2. An inspiration and has a “can do” attitude (optimistic).
  3. A person who thinks of others and does not, for example, think of a specific disease but about all rare diseases.
  4. A creative person.

Then we were asked to name someone as an example and identify a number of his/her characteristics. Several people used a father or mother as an example. Some of the examples: openness, honesty, love, trust, perseverance and helping other people. In some cases, these people would have many characteristics that the other would not have. During the discussion that followed it emerged that these people often possess these characteristics which were confrontational for these people. What also emerged during the discussions was that various people carry with them everything that they have unconsciously inherited from their parents.

In several cases, people had met other people who were waiting for them, although it was only afterwards that they realized it. I think this applies to many people – we often do not stop, rather we run through our busy daily lives.

At one point, personal growth was discussed. Several people thought this was due to the environment -particularly other people – but this proved not to be correct. Personal growth comes from within.

Gene asked everyone what he/she thought was currently the biggest problem in the organization.

Several people suggested a problem point for group discussion. The core was how to tackle it.

We had to ask the person who posed the problem and not give advice. Questions had to be asked in a certain way. We could not ask questions that start with “can … ” because this is, in fact, a ‘binary’ question (‘yes’ or ‘no’ answer). We had to open a question explicitly with ‘how …’ , making it an open-ended question. What is also important is finding the question behind the question. Look at the other and see the other. Do not see yourself in the mirror. Once the person who placed the issue on the table starts asking questions, a transformation occurs. A famous quote about changing people was also noted, and indeed who can change a person. It was nice to see the effect of the judgment of Gene: You can only change yourself!

The workshop was an interactive workshop, where the group introduces and works on everything together. This was very evident when during the introduction of the problem points per organization, the one who brought in the problem was told that she was the problem but also the solution. This person had a big problem with the comment that she was the problem. She had tears in her eyes and the whole group responded. The energy in the group collapsed and the atmosphere was less pleasant. Gene took this very well. First, he took the blame and secondly he offered his apologies. Then everyone asked to show appreciation to the person who was in tears. Within ten minutes the energy had changed, and the atmosphere in the group was again positive. It was a beautiful experience with group dynamics.

On Saturday the annual awards dinner was held during which awards will be presented to people who have made some great contribution.

One of the people who received an award, unfortunately, died in October 2010. His name is Dennis Pollock. I knew him personally and the news of his death touched me greatly.

This year an award was presented to a doctor who has made considerable progress in Progeria research. Progeria is a rare disease in which the body ages rapidly, and the patient normally does not live to be older than approximately 14 years. One of the physician’s patients was present and his name is Sam.

In the course of this year, an informal M-CM organization was created which communicates mainly through Facebook. M-CM is a variant of CMTC in which the main characteristic is an enlarged head.

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