2010 Annual Report

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2010 Annual Report

4301 Connecticut Ave, NW

Suite 404

Washington, DC 20008

http://www.pxe.org

info@pxe.org

202.362.9599

 

Mission Statement

PXE International initiates, conducts and funds research on pseudoxanthoma elasticum (PXE), educates clinicians and supports affected individuals.  

 

Introduction

Strategic visioning and new leadership resulted in effective advances in patient education/information and research in 2010. Our concrete and measurable goals, established in preparation for the next 10 years, strive to increase connectivity with our participants, productivity and effectiveness of this essential support system for individuals affected by pseudoxanthoma elasticum (PXE). PXE affects one in 50,000 to 100,000 people. Though these numbers are small (resulting in about 4100 individuals from around the world in our registry), service to these individuals is as critical as it is for any disease. In fact, PXE International often serves as a model for other conditions and their research and services.

Through listservs, webinars, MemberGrams, updated print information, eNewsletters and social media (Twitter, Facebook, LinkedIn), we have been able to increase our communications with patients and their families as well as further understand our changing community. We have also built a better mechanism for communicating with researchers to keep them informed of opportunities and developments in their arenas.

In the last year, PXE International has been able to transform our processes, branding, and products. This was possible with generous grants from foundations such as the Leona M. and Harry B. Helmsley Charitable Trust and Yardi Systems, as well as thousands of individual donations.

PXE International completed its 15th year of advocacy, research, and support. We have come a long way from the children’s’ playroom in which we were founded. So has our community. Our population is changing and growing and requiring different services than it did before. We must step into the 21st century and take full advantage of the exciting new methods of communication and information dissemination. Extensive strategic planning, including new, dynamic leadership catalyzed our achievements this past year.

 

PXE Research

One of PXE International’s major goals is to support and facilitate research. This is a very expensive pursuit and requires that we vigorously commit our time, energy and resources for the discovery of new information and treatments. This year we launched a 15th Anniversary Challenge with the bold goal of raising $1.5 million over the next 5 years.

 

Fig1
Pledges as of January 2011: $300,000

 

A Selection of 2010 Accomplishments

Projects

  • Created a listserv and regular communication mechanism for the Research Consortium Updated all email addresses on the listservs

  • Updated all of the addresses in the database through an online and a phone campaign

  • Codified processes for conducting webinars, planning a biennial conference, planning a research conference and producing a MemberGram

  • Created new website with fresh design, new content, and better content management system

  • Rebranded Organization

  • Planned and held the 6th Biennial Conference and the 2010 Research meeting

  • Produced and distributed two Membergrams and 6 eNewsletters

  • Organized and held 6 educational webinars

 

Goals for 2011

Projects

  • Plan and hold 4-­‐6 international and regional meetings

  • Publish eNewsletter monthly

  • Publish two supplemental updates in spring and summer and one (1) Membergram in November

  • Create and implement outreach program to engage existing community and generate more members and funds

  • Raise at least 1/5th of our Anniversary Challenge

  • Actively pursue and promote research opportunities with grants and reward incentives

  • Create fundraising committee

  • Provide support to those seeking to organize and hold fundraisers

  • Use our social media in a more effective and professional way (Twitter, Facebook)

  • Make our website functional, attractive, and efficient

  • Revise all other medical bulletins as well as update the FAQ area

  • Pursue research into PXE biomarkers, substrate, organ transplantation in mouse model, and developing a clinical trial

  • Explore and raise funds to hire a research director

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