Greetings Once Again,
For this edition of my Chairman’s Blog I’ve decided to talk about the future and not the past although it’s been good to us, we’re still here right! At this moment, there’s new workings in place I’d like to tell you about and even more important, our horizon just gets better and better every day.
Just in the last week we finalized a program with Friends of Patients at the NIH. An organization who provides travel and accommodation grants to patients who cannot afford to travel to Bethesda MD. We have setup a separate account with them whereby you may donate through them specifically for RP patients which will go directly into a pool of funds to enable at the NIH’s digression, who receives such a travel grant. RPASF receives no financial compensation from any donations, we created this to simply help provide donors a direct route to help specifically for this purpose. The Friends of Patients at the NIH does charge a 15% management fee for their involvement. I do want to say that they went way out of their normal way of business to do this for us and they are due our gratitude for that. To learn more, visit: https://friendsatnih.z2systems.com/np/clients/friendsatnih/donation.jsp?campaign=5.
Now that we’re full swing into Summer, which is our break time for the year with no events. We are putting our budget and schedule in place for later this year and into next year. As you can see, we’ve created a new T-Shirt unlike all the other shirts we’ve done in the past https://www.customink.com/fundrais…/rare-beyond- compare-2017, along with making our wristbands available which we’ve received many requests for.
Our biggest event of the year is upcoming the first week of November. The meeting of the American College of Rheumatology in San Diego CA. A meeting of over 17,000 doctors and Rheumatologists from across the world. Providing us the best of the best where we can make a difference. Along with our Relapsing Polychondritis exhibit on the exhibition floor, Dr. Ferrada will be giving a one-hour mini seminar on RP during the doctor’s sessions at the meeting. One very exciting thing is RPASF will be sponsoring a reception and buffet dinner/meeting to give the members of the Relapsing Polychondritis International Coalition Group to “Get to Know Each Other”. As you can imagine getting 25-30 doctors from at least six countries together for such an event is a daunting task. Our thanks to Dr. Ferrada for facilitating this important gathering.
Right after ACR on November 11 th we jump into “The 3 rd Annual LA Los Angeles Autoimmune Walk”. We have very high hopes once again as we partner with the American Autoimmune Disease Related Disease Association (AARDA), Barb and Haley Ramm and a new Project Coordinator this year. Hopefully culminating into what we hope is the biggest blowout for this year for everyone concerned.
All this leads us forward as we move forward into next year. There are many events before us so as we proceed to support Research, Awareness and Expansion of our already large Support networks covering six countries.
A special thank you to everyone for their support this past season. The American Autoimmune Related Disease Association (AARDA) for their support with the autoimmune walks, our Brand Ambassador and professional race car driver Kyle Marcelli, Go Kyle #Racefor RP, the sponsors of the Twilight Ride for RP and many, many more. For more information to learn about RP, to buy a T-Shirt, donate or continue reading here on our website polychondritis.org. If you’re new to us or haven’t viewed it yet, I strongly recommend you watch our documentary “RP The Ride of
My Life” at: www.rptherideofmylife.org.
We are, Rare. Beyond compare,
Tom Christie CEO
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