15th Anniversary Challenge

You helped us raise $1.5 million dollars in 5 years for PXE Research!
 

 

 

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JUNE 10, 2015 - A final push toward $1.5 million raised - Thank you to all who have contributed!

The 15th Anniversary Challenge launched in the fall of 2010 with the goal to raise $1.5 million in 5 years for PXE Research. As of early June we have raised $1,385,222 - only $114,778 to go by the end of 2015! Please donate to help reach this goal. All donations are tax-deductible.

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DECEMBER 24, 2014 - A day that gives me great pause

Dear friends,

This day gives me great pause, and I wanted to share that with you. Yesterday marks 20 years since Elizabeth and Ian were diagnosed. I remember December 24, 1994 like it was yesterday - our panic, our fear, and our heightened sense of the preciousness of life. I remember sitting on Christmas eve with Lionel Bercovitch, the dermatologist who had diagnosed them the day before (and coincidentally our neighbor!), while Pat and I tried to absorb what this pseudoxanthoma elasticum (PXE) meant for Elizabeth and Ian, and for our lives.

You know the rest of the story (here is a version of it we wrote a long time ago). We are so grateful to those of you who continue to support PXE International each year - both with monetary donations, and for those PXEers who have donated health data in the new online survey.

Blessings and immense gratitude to all of you this day and this season.

Love,

Sharon and Pat Terry
 


JANUARY 2014 - Thank you for your generous support!

Throughout 2013, the PXE community has shown tremendous support for PXE Research, and we are humbled by everyone's contributions. There were many creative givers! One PXEer held a silent auction on her private Facebook page, and raised $390 in response to our Join Together to Divide and Conquer challenge in August. Others in the community gave of their time - writing articles for this eNewsletter, counseling other PXEers going through tough times. And there is that totally unique group of PXEers who have given their time and resources (and bodily fluids!) to participate in the first-ever PXE clinical rial, testing magnesium supplementation as a treatment for PXE. Faithful supporter, Yardi Systems, once again awarded PXE International a generous one-year grant of $25,000 to support PXE Research. The annual appeal at the close of 2013 was a grand display of your giving spirit. Two matching grants, one for $1000 (anonymous) and one for $2500 (Kemp Battle), were posted to social media and the email listserv, and readily matched. Thank you so much to all who gave.

The 15th Anniversary Challenge, launched at the 2010 Biennial Conference, boldly set out to raise $1.5 million dollars in 5 years. Because of your generosity, the pledges received to date total almost $1 million dollars! This is an amazing feat, and makes us here at PXE International even more determined to serve you better in 2014. Let's move this thermometer to the goal by the 20th anniversary meeting in 2015!

 


JANUARY 2013 - Over half way there thanks to you!

We have accomplished so much in the last 18 years - Help us fund pressing research by donating to the 15th Anniversary Challenge!  Make a pledge using the 15th Anniversary Challenge pledge form. Or send a check to PXE International, Attention Mary - 15th Anniversary Challenge. Or donate online. We thank you so much for your generosity.

 


SEPTEMBER 2010 - 15th Anniversary Challenge Launched
Raise $1.5 million dollars in 5 years

We have seen 15 years of incredible successes, including our biological sample repository, clinical registry, genetic test, mouse model, cell studies, many natural history studies and even clinical studies. Your support, and PXE International´s organization of the research on pseudoxanthoma elasticum (PXE), has been phenomenal.

But – should we rest on our laurels? NO! The time is NOW to move forward on this wonderful platform we have built. We have an enormous opportunity in front of us. There is a wonderful convergence of excellent advances in medical research and our understanding of PXE.

PXE International is always bold. We take risks that result in great benefits. Therefore, we are announcing our next and most daring goal so far. We will raise $1,500,000 over the next 5 years.

Our last challenge was the Race for Research from 2006 to 2010. Due to your generosity, we raised $250,000! All of the money raised was used to fund critical studies in the US, Italy, Hungary and elsewhere. It is these studies that have us poised to move into treatment discovery and development for PXE. And these funds leveraged other funding in the US and Europe from government agencies.

In November of 2010, scientists from all over the world came together to report research results and to collaborate on a comprehensive plan for research for the next 5 years. We commit to assuring these scientists that we will find the funding for the plan they create. 

For this we need your help. We need you to make a commitment, a pledge, to support this bold plan. You can give us whatever you can afford – small or large – all at once or via a periodic donation. We cannot thank you enough in words for your contribution – but we can thank you with the commitment that we will take every dollar and grow it, and it will catapult PXE research into the stratosphere!

To see what PXE International spends its time and energy on, read our Annual Report.
 

MAKE a PLEDGE ONLINE PRINT a PLEDGE FORM DONATE through PAYPAL
Over the next 3 years And mail it to us with your check
or credit card instructions
At Donation Purpose,
select '15th Anniversary Challenge'