!!Our Sister Support Group on Facebook Celebrates 1000 Members!!
Our “RP - Relapsing Polychondritis Awareness and Support” Group on Aug. 30th 2014 has topped 1000 members in just a matter of just 5 1/2 years. RP affects only 3-5 people per million of population so it’s no small accomplishment for such an ultra rare disease and its patients to achieve this milestone in support. Although it is a closed group, anyone who is in some way associated with RP may join.
Says Carol Giordano – Group Moderator,
“August 30th, 2014. Who would have thought this day would ever come. I’ll surely remember this date…thanks to EACH OF YOU!”
Let the RP Road Trip Begin!
First of all we want to thank all of the people who have contributed to this important event thus far. The airline tickets have been purchased and some of the accommodation expenses are covered also. We still need your help to cover those remaining expenses along with transportation and meals. We have been fortunate to have people donate rewards program points and such, so if you have any hotel perks or even gift cards or coupons you wish to donate that would be a wonderful addition also. To make a monetary donation please use the “Donate” button below or for other donations please contact email@example.com with details.
Tom’s Road Trip starts this Wednesday Aug. 20th with the roll out of RDLA’s
In-District Lobby Days 2014
In August and September, Members of Congress will return home to their districts to connect with constituents. This is the perfect opportunity for rare disease advocates to strengthen relationships with Members of Congress or build new relationships.
His meeting schedule is as follows:
US Sen. Al Franken, August 20th
US Sen. Amy Klobuchar, August 26th
US Rep. Erik Paulsen, September 4th
Then on September 9th he’s off to WashingtonD.C. for AARDA’s
NCAPG Summit on September 10th.
A day long NCAPG Summit meeting of Coalition Members is scheduled for September 10, 2014 in DC. The purpose of this meeting will be to develop priority advocacy issues and other projects that will be beneficial to members.
Then, very early on the morning of September 11th it’s off to Huntington Beach, CA to attend Global Genes 3rd Annual “RARE Patient Advocacy Summit”
Empowering Patient Advocates to Become Successful Activists
Held on September 11-12, 2014 and the Third Annual Tribute to Champions of Hope Gala on September 13th
Two full days of seven Sessions and Deep Dives with topics like Caregivers: Strategies to Stay Afloat, Innovations in Science Presentation, Patient-Centered Benefit-Risk Assessment and The Unstoppable Charity. Then on Saturday September 13th he will attend a four hour Corporate Alliance Meeting followed by Tribute to Champions Gala that evening, leaving for home on Sunday. Tom will be checking in to update us on his activity and highlights daily so we may enjoy his progress in these first representations of Relapsing Polychondritis at this level ever. Please show your support for Tom’s efforts on behalf of the Relapsing Polychondritis Awareness and Support Foundation by making a one time donation below.
Summits and Meetings Sponsored By
It is my honor and privilege as Chair/CEO of the RPASF, Inc. to make the following announcement!
RPASF, Inc. is now a 501(c)(3) – tax-exempt organization (public charity)!
The IRS has determined that we, RPASF, Inc. are exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Service Code. Also contributions to us are deductible under section 170 of the Code. We are also qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the code.
The Effective Date of Exemption is: March 16, 2013
This would have not been possible without the help, hopes and dreams of the following people. Board Member/Advisor – Carol Giordano, Board Member/Secr/Treas -Susan “Dale” Ross, Our Medical Advisor – Dr. Stanford Peng, Exec. Asst. – Amanda Feexico, Medical/Health Advisor – Dorothy “Dot” Droege, Health and Welfare Advisor – Guruatma Khalsa and our Advocate/Advisor for Northern Europe – Bianca Bras. Ladies, stand up and take a bow. I would also like to thank Joseph Levitt, Esq. of Davis Law Office, LLC for his help in this process.
Of course we know it’s because of you it’s become a reality. It’s because of the belief, support and generosity of our contributors and volunteers we have gotten this far. We shall forever be indebted to you for putting your faith in our cause and providing the motivation and finances to keep us moving forward.
We look forward now more than ever to pursuing our core belief that:
“There’s a Ray of Hope on Our Horizon”.
Chair/CEO RPASF, Inc.
Our Document from the IRS (click to enlarge)
Check It Out
Our Latest Outreach Support Group
Pediatric Relapsing Polychondritis (Closed Group)RP (Relapsing Polychondritis) is a rare, chronic, aggressive, incurable condition. It is thought to be an autoimmune disease, but it is also thought to begin in mid-adulthood. We KNOW that RP is NOT only a disease in adults. It is now known, especially by these members, to be diagnosed as early as infancy. This group is designed for parents, family members and caregivers of CHILDREN with RP. We also welcome those whose child(ren) are now grown, but were diagnosed as a child. These very special families need each other for help, support, ideas, answers, advice and – of course- the very many questions. We appreciate that you are here to help each other. As an outreach group of the Relapsing Polychondritis Awareness and Support Foundation (RPASF, Inc.), we also encourage you to visit and like our Facebook page at:
Relapsing Polychondritis Brochures
Download A FREE Copy Of Our Brochure Here