eNews November 2012
November 30, 2012
Volume 5, No. 10
Please donate to PXE International's 15th Anniversary Challenge!
As PXE International begins its 18 th year, we are in exciting times! The most phenomenal advances in PXE research and potential treatments are here. We can’t let these opportunities pass us by. Too many people are depending on us to save their sight, to save their loved ones from all of the difficulties associated with PXE. Please invest in this terrific and essential work.Three years ago we kicked off a five-year quest to raise $1,500,000 for PXE research. To date, we have raised almost 50% – which is terrific! Thank you to all who have contributed. But it is not yet enough. We have two more years to reach our goal and we can’t do it without you. No amount is too small, and all donations are so very much appreciated!
Here’s how you can give :
- Download a pledge form, and send in your check. This saves us credit card processing fees, and makes your dollar go further.
- Go online and enter your credit card on our online donation site .
- Call Mary Peckiconis at 202.362.9599 x 208 or email her at email@example.com for personal attention as you donate.
Limited time offer
PXE International will send you a Jessica Harper CD for donations over $30
and a Crabby Cook Cookbook for donations over $100!
Shop through iGive and you will be donating a percentage to PXE International every time you make an online purchase. It’s easy! Here are directions to get you started .
May you and your loved ones have a blessed holiday season!
Now recruiting! - Clinical trial of magnesium supplements in the treatment of PXE
Dr. Mark Lebwohl of the Mt. Sinai School of Medicine and PXE International are now recruiting those with biopsy-proven PXE who are 18 years or older to participate in a two-year clinical trial of magnesium supplementation as a treatment for PXE.
Please email Abbie Moore or call her at 202-362-9599, extension 252 if you are interested.
Passing the Torch
Approximately three years ago, Elizabeth Terry, daughter of PXE International founders Pat and Sharon Terry, decided she wanted to give back to the PXE community. She consulted with a friend, Kemp Battle, who worked with her to determine just what that activity should look like. Together they discerned that she should become the second executive director of the foundation, taking the reins from Sharon. Elizabeth, just graduated from college, knew she had to put together a good package, complete with milestones, to present to the board of directors – both so she would be taken seriously as well as to make the mark she had in mind. The board approved her for the proposed two-year stint as Executive Director. That two years (more like two and a half) has just come to an end.
Elizabeth exceeded all of her milestones, which means PXE International has risen to a new level as an organization. During her tenure, she rebranded the organization, instituted a monthly health challenge, set a rigorous fundraising challenge of $1,500,000 over five years, reinvigorated the regional meetings, infused social media tools into the communications of the organization, and renewed the website. She also provided consistent and solid coordination for the staff. In short, she was a wonderful gift to the PXE community. Elizabeth stepped down at the recent PXE International Biennial Conference, and has secured a Teach for America position for 2013.
Having raised the bar for leadership considerably, it is important for PXE International to continue all of the practices Elizabeth put in place and more. Therefore, we are delighted to announce that Terry Mac Dermaid is the new Executive Director of PXE International! Terry has been with PXE International for more than four years as the Assistant Director. She brings a great deal of energy to everything she does. She is very organized, yet flexible. Terry has a special compassion for individuals who need our help, and a professionalism that serves our clinicians and scientists well. Further, despite the typical challenging financial situation of a nonprofit, she is able to do a great deal with very little. Our members feel well served by Terry, and we are delighted to have her step into this senior leadership role.
Sharon Terry continues as CEO and spends most of her time on research coordination and fundraising.
Recent experiments on mice with PXE have shown that when fed a diet very low in magnesium, the mineralization of the soft tissues in their muzzle skin progressed more quickly than in PXE mice fed a normal diet. Read the lay summary.
PXE and the Eye medical bulletin - Now updated!
One of the organs affected by pseudoxanthoma elasticum (PXE) is the eye, particularly the retina. Symptoms of PXE in the eye tend to evolve in stages and the range of severity varies widely. While some patients may eventually become legally blind due to the loss of their central vision, others may only experience benign eye symptoms with no vision loss at all. This bulletin is designed to explain in depth the eye symptoms experienced by patients with PXE, their typical progression, and the effectiveness of available treatment options. Read PXE and the Eye.
Caring for Pets - a Special Privilege
PXEer Terry Bates opens Tiny Bubbles Pet Grooming
in Waterford, Michigan
Though Terry Bates may be visually impaired, this doesn’t inhibit her vision as a business owner and animal lover. Fighting a difficult battle with her eyesight has made the journey a challenge, but with the proper support and a lot of courage, Terry is once again a successful business owner. Read Terry's story.