The information we have is compelling, but more information is better. I ask each of you to take 15 minutes and complete the Registry. We need FEWER THAN 300 more people to surpass 1,000 participants and give researchers a better understanding of P/P. Your contact information is NEVER shared and when we look at the responses, all we see is a number, not a name; a state/province, not an address. Can YOU help us pass 1,000 by the next issue? I think you can at www.pempihgus.org/registry. The 2013 Patient Conference (formerly the Annual Patient/Doctor Meeting) will be in San Francisco, April 26-28, 2013. The Planning Committee is looking to capi- talize on the success in Boston — and we think San Francisco is the place to do it. If you have never been to the Bay Area, there is no better time that April 2013. And if you live in the Bay Area, join us at Stanford September 29, 2012 for the Bay Area Sup- port Group Meeting (11 am – 2 pm, pemphig.us/ippf-basg-201209). The Holiday Fundraiser will be gearing up in a couple of months and I am challeng- ing each and every one of you to find one person to match your donation. Imagine if 2,000 people gave just $50 — and their one friend gave $50. These donations will af- ford us the opportunity to have more Peer Health Coaches to answer your questions, more informational materials for physician offices, more educational materials for patients – and the list goes on … but we need your help to make 2013 bigger and bet- ter than 2012. And don’t forget you can now give a monthly amount that is automat- ically deducted from your credit card. How about giving $25 a month instead of $100 all at once? It’s just as easy and makes a big impact for us – and a bigger tax deduc- tion for you! You can always donate online at www.pemphigus.org/donate. Thank you for your continued support and we hope you enjoy this issue.
For those newly diagnosed, or their family, friends or caregivers, it can all seem unreal at first. There is a vague beginning to the new normal, as it takes time to get educated and to process the diagnosis and information. Even after there is an acceptance of the situation, it is overwhelming.
Everyday life becomes uncharted territory. One thing is for sure: now challenges seem to pop up a lot more. How the challenges are met will make the difference between function and dysfunction.
The pemphigus and pemphigoid (P/P) community is not a static one. Everyone goes through different stages in different ways, but with more similarities than differences. This is why the community continues to grow. People who have had very similar situations – and have made it through to the other side – are there to help you. Eventually, once your own life and illness have stabilized, you will have the opportunity to be there for others.
Some people will get more ill than others, and some people will respond more quickly to treatment. For everyone this is an adjustment — and again the degree of difficulty differs between people. Having an IPPF community, with a discussion group, a social media presence, award-winning newsletter and website, peer health coaches and volunteers (and more!), has helped many people along this journey in so many positive ways. Maybe YOU have been helped by one or more of our resources?
The IPPF works hard to ensure that no one has to go through this alone; this is not just helpful, but a bond, and one that strengthens everyone involved. It is a lifelong bond – one that keeps gaining strength. No one has to navigate this road alone any more.
This is the time of the year to give; but in our community, there is a need 365 days a year – not just one “giving” season. If you are not currently participating in some way – ANY way – there are many who would love to see you get involved.
ou do not have to dive into the deep end.
Start small, get your feet wet and move forward at a pace that is comfortable for you. Ask for help, guidance and advice along the way.
Consider sharing part of your journey with others in the P/P community. Maybe you…
- know of an informative article we can use in the Quarterly?
- would like to contribute a personal story that inspires others?
- are available for an interview for an article?
- can reach out to a newly diagnosed patient to lend an ear and encouragement?
- have advice for the newly diagnosed we can share on a broader scale?
Because of the support in our growing community, health coaches, webinars and annual patient meetings, you will meet people who can help you learn new positive coping strategies. These new tools will allow you to continue your own movement, becoming more and more resilient along the way. You will internalize the newer and more positive coping mechanisms, and hopefully leave behind older, strategies that are no longer working.
The point is that you WILL find yourself feeling and presenting yourself differently in this world. When you calmly and rationally respond to someone in a new way (rather than reacting), your response may even change how the other person responds to you – and others – in the future. You will gain momentum and move forward in your personal journey.
As I write this column, it is a typical colorful Pittsburgh Fall. Some trees are still green, some have lost their leaves and are bare, and others are continuing to change colors and are absolutely glorious.
Practicing mindfulness and being “in the moment” allows one to just watch and enjoy nature with a combination of awe and appreciation. I’m not a personal fan of cold weather and bare trees, I know we will have winter wonderlands soon, with freshly fallen glistening snow – on the ground and on the trees. Everyone’s personal journey moves forward and changes just as the seasons change and cycle.
During your life journeys there are choices to make and different roads which can be taken. You can take the road most often taken or take the one not usually taken — neither is correct or incorrect. Just remember that there are always choices. Also try to remember that road that seems most “safe” may not be and may not help move you forward. Everyone makes mistakes, because humans are not perfect. Mistakes help people learn. Moving out of your comfort zone is not easy; it is a choice, and if you choose to stay on the same seemingly “safe” road, that is also a choice. Please let this last point sink in. DOING NOTHING IS A CHOICE.
Yes, life is a journey, but as you travel through, remember this quote: “What lies behind us and what lies before us are tiny matters compared to what lies within us” (Ralph Waldo Emerson). If you are reading this article and have gotten this far, look within yourself for that extra strength that may seem to be eluding you; it doesn’t always come from others. Maybe you just need to look a bit harder within. And, do not be afraid to ask for help.
Happy holidays. Try to start a new tradition this year. Tis the season to give – not just money, but of yourself. It will make your own personal journey more interesting and also sweeter, and by reaching out to others you will be making a far more important and satisfying contribution.
Kate Frantz is settling in and getting the Awareness Campaign up and running; Monique Rivera has been busy processing donations and keeping the information flowing; Kevin Cruz has been working on patient and caregiver handbooks; Isaac Silva has been doing some web site work while learning more about the IPPF; Marc Yale and the Peer Health Coaches have been helping patients at an astonishing rate; and the Board of Directors and our Medical Advisory Board continue to be instrumental in shaping our future.
2013 Holiday Fundraiser. This fundraising season is shorter than usual with Thanksgiving falling where it did, but so far this has been one of our best efforts in recent years. Along with first-time supporters like Rana, Hartmut, Chris, Patricia, and Bob it has been great to see the names of long-time supporters like Lillie, Joan, Alice, Yvette, Carol, Ellen, Jay, Sonia, Ed, Therese, and dozens of others who continue to support our important work. If you have not donated there is still time. And make sure to date your check accordingly so you get your 2013 tax-deduction!
Awareness and Education. If you missed the August buzz on Facebook, Rebecca Oling and MAB member Dr. Animesh Sinha were guests on Good Morning New Haven (Connecticut) talking about pemphigus, pemphigoid, and the IPPF. She followed that up with a trip to Houston, Texas, to participate in a 4-hour long video shoot for IPPF that will be added to the Giving Library (www.givinglibrary.com). Add to that scouting the globe for patient educators, helping people on Facebook, traveling to sit with patients and their families, working full time, and being “Mom, wife, daughter, and sister” and you can see why Rebecca is my hero!
What do you get someone turning 20? How about a party in Chicago! The IPPF celebrates its 20th Anniversary in 2014 and we are planning an evening of food, friends, and fun at the 2014 Patient Conference. On Saturday evening (April 26, 2014) join us for dinner, our Annual Awards, and an Anniversary tribute followed by a Casino Night fundraising event. More information will be available soon! Proceeds go directly to our Patient Support programs. If you’re in Chicago, I hope to see you there!
2014 is now a couple minutes closer than it was before you read this letter. With Autoimmune Disease Awareness Month, Rare Disease Day, Pemphigus & Pemphigoid Education and Awareness Month (New Jersey…come on NJ SJR77!), 17th Annual Patient Conference, and more on the horizon – we need your help! If you’re interested in spreading the word and mission of the IPPF, call or email me and let’s do this together!
Thank you, Happy Holidays, and from my family to yours – Happy New Year!