Tag Archives: volunteers

Can you believe Summer is here? The days have flown by in a whirl- wind of activity here at the Foundation and I would like to take a moment to fill you in on what is in the works. In case you have not heard, the 2012 Annual Meeting in Boston was a resounding success. It was a true team effort from Planning Day 1 through Sunday’s closing remarks. We ended up with nearly 275 attend- ees, speakers, and volunteers – more than any other meeting in our his- tory!

Attendees included patients in remission for 20+ years, to a patient diagnosed a few days before the meeting started. If you were there, then you already know how incredible this meeting was — and the fireworks were truly a coincidence!

If you were not able to attend, then you missed a doozy, but fear not: everyone can visit www.pemphigus.org/2012am and get copies of the program, presentations, and available audio. I would like to personally thank everyone who helped make this meeting possible – and the success it was! Turn to page 7 and see who made the 2012 Annual Meet- ing THE meeting to top! And don’t forget to mark your calendars: the 2013 Annual Meeting will be in San Francisco, April 26-28! Dr. Terry Wolinsky-McDonald’s “Psychologically Speaking” column will return next issue. If there is a topic you would like her to cover, please email her at terry@pemphigus.org. As we move into the second half of the year, the IPPF is focusing on in- creasing physician awareness. Remember when you, or someone you know, was first diagnosed with pemphi-what? Were you one of the lucky ones who was diagnosed in less than a month? Or even less than three? Most are not that lucky.

In 2011 the IPPF funded a study to determine how long it takes new patients to be diagnosed. The results indicat- ed patients see an average of 5 doctors over a 10-month span before receiving a proper P/P diagnosis. This does not have to be! With the right information available to physicians, patients could be di- agnosed in days or weeks, not months or years. Our goal is to increase pemphigus and pemphigoid awareness in the medical professions. During March 2012’s National Autoimmune Disease Awareness Month, we raised almost $10,000 towards P/P awareness. In April 2012, the IPPF was awarded a $15,000 grant from the Sy Syms Foundation to help with our Awareness Campaign! And recently, a special do- nor has pledged even more towards our awareness efforts! But we are not there yet! Awareness campaigns DO work! To get the most coverage among dermatol- ogists, dentists, and other specialties, we need your help! This summer we are asking everyone to con- sider a tax-free contribution specifically for our Awareness Campaign. You can donate online at www.pemphigus.org/donate, call our offices at (916) 922-1298 ext 1003, or mail in the form located inside the back cover. Please consider asking a friend or family member to support this very important effort. And don’t forget about Matching Gifts from your employer! Con- tact your Human Resources department for more information. The sooner we can fund this project, the sooner we can increase physician awareness — and the sooner pemphigus and pemphigoid patients will be diagnosed and treated. That means patients can begin their journey to recovery and remission sooner than ever before! Finally, thank you for your continued support and have a safe and happy Summer!!

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!

Summer is drawing to an end, kids are back in school, and the IPPF is preparing for our end-of-year activities. I want to thank everyone help us carry our mission to the four corners of the globe. Volunteers are becoming more and more important in our daily operations, and every bit counts.

Helping us in the office will be not one, but two Cristo Rey High School student interns. For the fourth year in a row, we welcome back Kevin Cruz. Kevin has spent the past few years entering data into our patient database, uploading content to the website and Facebook page (who can forget his Chuck Norris quotes?), and other IT functions. This year he is working on patient and caregiver guides to provide essential information and tools.

And we welcome Freshman Isaac Silva who will help on the administrative side as he learns about our mission, programs, and services. Isaac will also help with the patient and caregiver guides to help him learn more about our community and how the diseases affect patients, caregivers, and families.

Cristo Rey Work Study allows low-income students to gain real-world experience in professional settings while receiving a private education. For more information on Cristo Rey High School Sacramento visit www.crhss.org.

And while I’m on the subject of helping move the IPPF forward, let’s keep talk volunteering. The IPPF needs people to help us keep overhead low and mission success high. For example, during 2012 there were 64.5 million volunteers in the United States. The United States Red Cross’ workforce is 94% volunteers (redcross.org). The Pacific Crest Trail Association (pcta.org) has over 1,600 volunteers along the West Coast. Please consider volunteering with the IPPF (related stories p. 6 and 11).

Pemphigus and pemphigoid awareness has always been an issue, but that is changing. In 2012 we helped introduce a resolution in New Jersey. The Canadian Prime Minister of Finance announced he had pemphigus vulgaris. Marc Yale visited Washington D.C. and spoke with members of the House and Senate. And our Awareness Campaign began to develop.

To help the IPPF with the Awareness Campaign, please join me in welcoming our new Awareness Program Manager, Kathryn Fraser, to our family. Kathryn is working with the Awareness Campaign Committee to develop next steps and prepare for a Best Practices Consensus Conference in Spring 2014. Along the way, Kathryn will provide updates right here in the Quarterly and online.

As our pemphamily grows, we remain close to one another online and in person. Family. That’s what we are.

We had a great patient conference in San Francisco last month. We introduced new content (e.g., talk on stress, R&D panel) and conducted the most streamlined conference in our history. Many thanks to all of our foundation staff, volunteers, and sponsors for putting on a great event! We look forward to a terrific conference in Chicago in 2014.

As the organization expands its activities by strengthening its patient support programs and by pivoting into therapy access/reimbursement issues and R&D and product development, volunteerism will become critical. For small organizations like ours, volunteers are a driving force. Our patients give us inspiration, and our volunteers give us propulsion. I ask you now to think about how you can contribute to the foundation.

We have created different types of volunteer positions to match people’s interests and lifestyle preferences. You also can rotate through different positions. Anyone can contribute – not just patients, but also caregivers, friends, anyone that feels strongly about helping patients with rare/neglected diseases, wants to give back with their time and expertise, and wants to help grow a small organization to deliver greater impact. We are looking to fill positions on the CEO’s Executive Board (“CEO’s senior staff”), Special Projects Contributors, and General Volunteers. Serving in one of these roles could position someone for greater leadership opportunities in the Foundation. Please contact us if you would like to volunteer, or even to just brainstorm what opportunities exist to best utilize your talents and expertise. If you have a skill or an interest, we will find something that works for you. (See page 4 for a description of volunteer roles).

Someone from the Red Cross recently told me that around 95% of their “workforce” consists of volunteers. We can do the same. Let’s leverage the power of the IPPF community to catalyze positive change.