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Poll: Logo for the International Pompe Day

Choose your favourite logo and submit your vote

The vote is already over! It ended on Wednesday, 20.November 2013 (00:00).

jVS by www.joomess.de.

Logo 1

 

Logo 2

 

Logo 3

 

Logo 4

Poll: Slogan for the International Pompe Day

Choose a slogan and submit your vote

The vote is already over! It ended on Wednesday, 31.July 2013 (00:00).

jVS by www.joomess.de.

 

Don't tell me what I can't do!
John Locke (Lost-Terry O'Quinn)

Hope is what makes us fight, when all else is lost.
Pandora (paraphrased, God of War III)

People who say it cannot be done, should not interrupt those who are doing it.
George Bernard Shaw

The DNA that binds us. Cure Pompe.
This in reference to the mutations in the gene that causes Pompe Disease. Relating to the DNA which in turn if you look at DNA it is binding while also referencing how the DNA binds the patient with the disease.

Together, fighting for the power to soar
(none)

Together We Are Strong
Pompe Disease robs us of our physical strength and abilities. But despite our physical weaknesses, I believe that we have a great strength as a Community. As a united community of patients, family, friends, physicians, scientists, and industry we have an undeniable strength. It is as a united community (the Pompe Model) that we have made great strides in learning more about Pompe Disease and in working towards treatments and disease management. It is as a united community that we support each other when the daily struggles of living with Pompe become too much. Nothing that has been accomplished would have been possible without everyone working together.

Tomorrow gives me strength today. Cure Pompe.
This in reference to how tomorrow could be the day that a cure could be found there for it gives the Pompe patients the hope they need to make it through today and each and every day until a cure is found.

Tomorrow is my strength today. Cure Pompe.
This in reference to how tomorrow could be the day that a cure could be found there for it gives the Pompe patients the hope they need to make it through today and each and every day until a cure is found.

We may be cool, but our disease isn't. Cure Pompe so we can have a brighter future.
And maybe our pin/picture could be a pair of cool sunglasses. Something funky and fun.

 

The proposed slogan "Care for Rare: Cure Pompe" was not incuded due to a potential conflict with the Care-for-Rare Foundation.

International Pompe Day

Which is your date of choice for an International Pompe Day?

The vote is already over! It ended on Saturday, 06.April 2013 (09:00).

jVS by www.joomess.de.

There were three additional dates proposed that were too US or Europe or Asia centric. In the spirit of International Pompe Day being representative of the entire International Pompe Community, these dates were not included in the poll.

 

February 29th
While it would be nice to have a separate day, an argument could be made for using Rare Disease Day.

March 2nd
To symbolize 32 (i.e. 1932) the year that Pompe was classified as a disease by Dr. JC Pompe.

April 1st
I have a daughter who passed away in November of 2007 at age 3 from infantile-onset Pompe Disease. Her birthday was April 1, 2004. I am sure you will get many request for the birthday of family members that have passed, but I wanted to try anyway. I miss [my daughter] very much and often wonder what she would be like now if she had been healthy.

April 15th
This is the anniversary of the day that Dr. JC Pompe died. There were two articulate reasons submitted for this date:
1) Normally when you want to pay homage to one person, so that his memory is preserved over the years you take the date he was deceased, not his birthday. This applies particularly to J. Pompe, given the heroic circumstances of his death
2) This date is especially important when one sees the year he died, and that is 1945. Dr. Pompe was executed by the German Nazi's as retribution for two SS officers who were killed by the Dutch resistance. Dr. Pompe was kept in prison as the Nazi's found his illegal radiobroadcaster in his animal laboratory of the hospital where he was working. He used this radiobroadcaster to communicate with the Allied Forces on behalf of the Dutch resistance.
Using this date means that we can also use the deeper meaning of that date. Not only that Dr. Pompe died, but especially that he died because he didn't agree with the ruling force and didn't agree with inhumanity. He fought to keep his humanity and beliefs. He 'raised his voice' by his deeds. He stepped up for a minority whose lives were denied (his Jewish fellow citizens that he helped to escape or hide).

July 29th
I know that many people are keen on the anniversary of Pompe's birth or death and I can understand why. I've done all I can to promote awareness of the great man and I can see the strong attraction. However, I have an alternative suggestion.
I suggest 29 July, which is the publication date of the Lancet paper that reported the results of the first ERT trial. My reasons for this are:
1) It celebrates an unequivocally positive event
2) It focuses the day on progress
3) It celebrates the activities of a community, in that it was an event that we all worked toward
4) It therefore also focuses on the 'Pompe model'
5) The emphasis on a treatment milestone will be an aid to raising funding issues, where necessary.

September 9th
Dr. Pompe's birthday

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