National Psoriasis Foundation (NPF) Regional Conference
The National Psoriasis Foundation recently held its Regional Conference in three different cities. The conference that I attended was held in Dallas, Texas, about three hours from my home. It was a one day conference with a lot packed into it. The day started with a wonderful breakfast that gave everyone time to socialize before the conference really got underway. The agenda consisted of four speakers giving information on different areas that the National Psoriasis Foundation are concentrating on currently. The first speaker reported on the 2019 Cure Symposium which is where scientists come together to discuss all the new research being done toward finding a cure for psoriasis. The second speaker spoke about engaging within your local community. The third speaker, which I am honored to say was myself. I focused on ways to fundraise so that the NPF can continue to fund the research to find a cure. The fourth speaker spoke to everyone about how they could become involved in the advocating efforts the NPF is involved in on the state and federal level.
The 2019 Cure Symposium
First, let me say that these Symposiums happen every year. The NPF, per their mission statement, is leading the way in funding research to find a cure. Currently, there are 41 different projects underway with funding provided by the NPF to the tune of 2.8 million dollars. That is an impressive amount. We were also told that next year's funding is on track to reach 15 million to be given toward research in helping to find that cure. Based on the reporting of the Symposium an interesting breakthrough has been made in identifying Interleukin 17 (IL-17) as a major cause of psoriasis reoccurring. Research is now underway to keep the IL-17 from causing this re-occurrence. For me, that was substantial because IL-17 has everything to do with my psoriasis. It has only been with IL-17 medications that my psoriasis has been controlled. She reported that current treatments do not stop IL-17 permanently. Another thing I found most interesting is that the speaker spoke of there being 20 billion memory T-cells in our bodies. These memory T-Cells can be found in biopsies taken from people with psoriasis and without psoriasis so the memory T-Cells are not the contributing factor in psoriasis as which was one time thought to be.
Engaging within your community
The keynote speaker spoke of why volunteers get involved in their local communities. Some of the reasons consisted of honoring a loved one, making a difference, having a sense of purpose and to strengthen their community. She stated that a lot of volunteers are often undervalued and underused by organizations. When this is the case one out of every three volunteers quit each year to never return. The conversation then turned to three key elements to burnout that volunteers experience. Those three elements being fatigue, cynicism or detachment from things or people and the lack of personal efficacy of the organizations not using the volunteer in such a manner that builds to their strength. No connection to burnout consisted of the number of hours volunteers put in, whether they are paid or not and whether or not they had direct client contact.
Fundraising and advocacy
I am grouping the last two sessions together because they go hand in hand. If you advocate you also have the option of fundraising. That is not to say that you have to do it but most non-profit organizations need fundraising to keep operating. The NPF is such an organization. As I stated earlier I had the honor to speak on fundraising. I have done three fundraisers. I spoke about each and then led the round-table discussions on how each person could do fundraising involving things they like to do. For my three fundraisers, I used walking and bingo as the activities. The next speaker spoke about how each person could get involved with the NPF on the state and federal levels. She stated that each person has a story to tell and could help push the NPF efforts forward by speaking to state and federal Congressional members. The NPF does provide training so that a person is understanding what is asked of them to do. If this sounds like something you might be interested in then please go to www.psoriasis.org and sign up to be an advocate. Our voices matter.
Has psoriasis affected your ability to sleep well?