The Chairman’s Corner A New Means of Communication 10/08/2014 Greetings All, Welcome to a new means of communicating and sharing information about our Foundations news and current activities. We are going to call it “The Chairman’s Corner”. It will hopefully become the forerunner of our version of a newsletter. I will be using this platform to keep our followers advised of changes at the foundation, new and news worthy information and our progress on advocacy initiatives we are involved in. I will not be talking about activities in the support groups unless I feel it necessary to bring to light, we already are pretty good at that anyway! There are a lot of activities that we are in involved in that our supporters never see or hear of and we’d like to change that. I will be posting news and updates on a monthly basis during the first week of every month for right now so let me begin! • On 10/01/2014 Kate Church accepted our offer to become a member of the Board of Directors of the Relapsing Polychondritis Awareness and Support Foundation. The acceptance was unanimously recognized and duly noted. A lot of us have known Kate for quite some time as she has been actively involved in several of the support groups and has a vast knowledge of the clinical aspects of our disease. Please take a moment to welcome Kate onboard at: [email protected] • One of our board members and officers of the corporation, Dale Ross was critically injured while working with some horses on her property. She is now home and resting as well as could be expected due to the nature of her injuries. Dale will still be involved on the sidelines for now until she recovers. Please feel free to wish her a fond get well at: [email protected] • On Sept. 14th I finished my 6 week long Road Trip for RP. The support we received was outstanding. During this period I met with representatives’ of two U.S. Senators offices and in person with Representative Erik Paulson of the U.S. House of Representatives. All three of the meetings we focused on upcoming legislation regarding rare and orphaned diseases. I was please to find the there is actually quite a lot of activity happening at this time as the push is on to streamline healthcare in the U.S. and to revitalize the process used to implement and follow up on research for these diseases. The next leg of my trip was to attend the AARDA planning summit in Washington D.C. for a day of discussion about prioritizing the AARDA agenda for the upcoming sessions in congress. The focus was primarily upon awareness, time to diagnosis and a global physician support network for rare diseases. I will follow up once I receive their action plan. Next it was off to sunny California for three days of the Global Genes 2014 Patient Advocacy Summit and Champions of Hope Gala. There were over 300 attendees from all the arenas of rare disease organizations. Two days spent in nine different topics and deep dives along with science update sessions. I feel that it was at this event where our foundation made its mark and claimed our ground in our advocacy against rare diseases. I learned a tremendous amount about everything from patient support, running a successful non-profit to science updates. I wish I could have attended all of the deep dives they had as I’m sure each one included volumes of information during them. Then as a wrap up on Saturday evening the had their Tribute to Champions Gala where the roster of recipients for the year were awarded along with some wonderful entertainment and a beautiful meal, all compliments to us from the folks at Global Genes. In summary, I couldn’t think of a better way for the RPASF, Inc. to be initiated into the world of 501(c)(3) rare disease advocacy organizations out there. We made many friends and met many resources that we will be collaborating with in the near future. • Here are some of the other recent activities and programs we’ve engaged in. After some waiting, we are now listed in the IRS database of 501(c)(3) non-profit charities. We are now officially listed as a Guide Star Charity. We are now engaged in the Amazon Smiles charitable giving program on Amazon We are now engaged in the Ebay Giving program on Ebay There are some other projects in the works as we enter into this coming holiday season. I’ll keep you all informed as they develop. That’s about it for round one of this new effort to keep you informed and involved in our efforts to hopefully wipe out this awful disease! See you next month. Best Regards, Tom Christie Chair/CEO RPASF, Inc. polychondritis.org
Posted on: Wed, 08 Oct 2014 07:48:03 +0000
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