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The 2012 Annual Meeting is in the books – the record books that is! The 15th Annual Meeting surpassed all previous records for the IPPF: attendance, sponsor- ships, speakers, excitement, en- tertainment, and more! A very special THANK YOU goes out to the IPPF’s Annual Meeting Committee. Co-chairs Dr. Terry Wolinsky-McDonald and Will Zrnchik, Sonia Tramel, J. Gregory Wright, and Marc Yale were joined by Dr. A. Razzaque Ahmed and Mr. Alan Papert, both from Boston. The commit- tee started planning the Boston meeting in July 2011 and the re- sults were amazing. The 2012 Annual Meeting would not have been possible were it not for the generosity of our spon- sors and volunteers. Our Plati- num Sponsor was KabaFusion (www.kabafusion.com). Dr. So- hail Masood and his team did ev- erything from helping with regis- tration and handing out awesome gift bags full of swag, to answering patient questions and greeting arriving guests at Saturday eve- ning’s Gala Celebration. The IPPF is pleased to welcome KabaFusion as a partner and we look forward to continued success.
Our Gold Sponsor, AxelaCare (www.axelacare.com), has been a sponsor since 2009 and Mr. Brian Cleary has helped many pemphigus and pemphigoid pa- tients with insurance-related is- sues. Our Silver Sponsors were Cres- cent Healthcare, Inc. (www. crescenthealthcare.com), PNC Wealth Management (www.pnc. com), and NuFactor Specialty Pharmacy (www.nufactor.com). Crescent has been an IPPF spon- sor since our 2006 Annual Meet- ing in New York. Both PNC and NuFactor are new sponsors and the IPPF welcomes them to our family. Our Bronze Sponsors were BIOFUSION (www.biofusion. com), Centric Health Resourc- es (www.centrichealthresourc- es.com), and the Massachusetts Eye Research and Surgery Insti- tution (MERSI, www.mersi.com). Biofusion first sponsored the IPPF back in 2003 and has been a valued partner ever since. Cen- tric has been a sponsor since 2006 and helped develop the free IPPF Health Management Program (www.pemphigus.org/hmp). The IPPF welcomes MERSI as a spon- sor this year and looks forward to the future. The Blistering Disease Sup- port Group from Boston con- tributed hundreds of hours of work to help with planning, din- ner, and entertainment arrange- ments; packaging thousands of product samples; and greeting at- tendees to the meeting. A special thanks goes out to the Stillman’s and Peckrill’s for their leadership of this massive project. The Bos- ton Support Group, led by Alan Papert, helped with site surveys,
event planning and A/V coordi- nation. Alan’s wife, Gloria Papert, was her usual self helping with the registration table, answering attendee questions, and making the event an enjoyable one for ev- eryone. Thank you, Alan and Glo- ria, for your support. Bruce Heath, Vicki Garrison, Phyllis MacPherson, Dr. Shawn Shetty, and Dr. Marsha Fearing from Dr. Ahmed’s office helped with everything from sending let- ters and flyers, to attendee and speaker reservations and regis- tration. And the muscle behind the event, Ike Mahmood and Gh- ulam Ali, helped package, load and transport over 2,000 pounds of donated products. Lastly, Kendra Smith, Con- vention Services Manager at the Hyatt Harborside, worked with the IPPF Annual Meeting Com- mittee to make the impossible possible. Thank you everyone for mak- ing this THE meeting that has raised the bar to a new level. The IPPF invites this year’s attendees, and the entire pemphigus and pemphigoid community, to join us April 26-28, 2013, in San Fran- cisco for the 2013 Annual Meeting (information will be sent out lat- er this year).
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The IPPF is looking for volunteers to help us with many of our education and support projects and programs, including in several newly-created roles. The three main types of positions we are looking to fill are Executive Board (CEO’s senior staff), Special Projects Contributors, and General Volunteers.
The Executive Board heads up a “department” or initiative under the CEO. This could include efforts like managing our patient support programs, planning and running our annual Patient Conference, running fundraising events, volunteer management, and research and development. Other areas include accounting, collaborations, and project management.

  • The commitment would be for one year or the duration of the initiative, whichever is shorter. And we are open to ideas for new “departments” and initiatives, and will even tailor a position to an individual’s talents and interests. This role is ideal for people that are operationally-oriented and want a significant role within the foundation.

Special Projects Contributors (SPC) have special expertise, resources, and access to give the IPPF a short-time commitment revolving around a specific area. This allows individuals to make a substantive contribution that fits their interests and lifestyle. Example projects include:

  • competitive landscape analysis
    review of clinical guidelines
    website and/or graphic design
    exploration of a specific clinical care question
    legal analysis of a specific issue
    accounting and investments
    technical writing and reporting
    building a data management platform for our patient registry
    development strategy
    helping set up and negotiate an external collaboration
    developing a market access/reimbursement advocacy strategy

The SPC role is great for people that have a special expertise they would like to use for a short-term project. Volunteers are encouraged to propose their own projects as well.
And equally important are the General Volunteers. General volunteers contribute across a wide range of initiatives and events. Example include newsletter and website contributions, print and graphic design, Patient Conference preparation and on-site help, event planning, peer support, and community fundraisers (e.g., 5K run, bake sales, wine and cheese tasting, golf outings, etc.). This role provides an opportunity for anyone to contribute with as much or as little time as they can.
We encourage those interested to tell us about their talents and interests, and we are happy to find a way for them to contribute.
These are great opportunities for anyone that feels strongly about our community, wants to give back to the Foundation with their time and expertise, and wants to help grow our organization to deliver greater impact.
All volunteers receive acknowledgment in our newsletters and website, and they can list the experience or project in CVs, resumes, and related documents.
If you or someone you know would like to get involved, please contact me at will@pemphigus.org or by calling the office at 855-4PEMPHIGUS (855.473.6744) extension 103.
Helping the IPPF through volunteering is a great way to help us help others. That’s the Power of Giving Back!