Announcing our Logo and Website Development Fund
You spoke and we listened! Our logo and website are the face of our foundation. They are the first thing people see when they search for information about RP and we all know how important first impressions are! What we need now is a company or individual with the skills to make this dream a reality and, as always, the funding to pay for those services.
Our first step will be finding, getting estimates and hiring a agency or individual that can do the work. Through that process we will get a better idea of how much money we need to raise to make this happen. If you know of a good company or individual that you think we should add to the list, please feel free to send their contact information to email@example.com. Even though we don’t have an exact cost, one thing is for sure, we are going to need a considerable amount of funding. So if you, your friends, family, neighbors, doctors or anyone else you know would like to donate to the Logo and Website Development Fund just click on the link below. This is a very exciting time for our foundation and this will take one step closer to achieving global awareness for RP.
We still need your help for Tom’s trip to DC on the 13th of November
RPASF, Inc is announcing they will be present in DC to enroll us in the New EveryLife Foundation for Rare Diseases
On November 13, 2014, from 8:30 am – 11 am, at the Darlington House in Washington, DC , our own Tom Christie will be attending and enrolling our foundation at the first EveryLife Community Congress meeting.
What is the Community Congress?
The Community Congress is a membership-based program of the EveryLife Foundation dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholder organizations together. Each Fall at the Community Congress annual meeting, members will learn about the Foundation’s scientific and policy goals, and help provide valuable insight on prioritizing future initiatives. Community Congress members will establish working groups on specific issues to provide an opportunity for continued engagement throughout the year to drive policy forward. Current planned working groups include Public Policy, Science/Regulatory Policy, and Newborn Screening.
Also on his agenda for that afternoon he will be participating in the Rare Disease Rare Disease Congressional Caucus meeting on Capitol Hill where Congressional Staffers who attend the Briefing will learn about the issues affecting the rare disease community, thereby increasing awareness and ensuring timely implementation of rare disease provisions of specific policies.
- Rare Disease provisions in The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187
- MODDERN Cures Act, H.R. 3497
- Patient Impact of regulatory challenges and roadblocks to participation in clinical trials only conducted outside the US
- International policy implications of US intellectual property provisions and their impact on innovation & access to new therapies
Later that evening Tom will be going to the Arena Stage at the Mead Center for American Theatre to represent our foundation at the Rare Voice Awards Gala 2014
2014 will mark the 3rd year of the RareVoice Awards hosted by Rare Disease Legislative Advocates (RDLA). The purpose of the Gala is to acknowledge and honor Advocates from Congressional Staff, Government Agency and the Rare Disease Patient Community who give rare disease patients a voice on Capitol Hill.
Please show your support for Tom as he continues his efforts to raise Awareness and continues his advocacy on behalf of the Relapsing Polychondritis Awareness and Support Foundation by making a one time donation below and thank you for supporting our cause.
Making your Mark
If you or someone you care about suffers from RP, you have probably thought about what you could do to help the cause. So many of us would love to be more actively involved in the Relapsing Polychondritis Awareness and Support Foundation but don’t have the money to donate or the time to be a volunteer. Well, if you are still working, it’s possible that your company may have what is called a Charitable Giving Program. One of our members, Sonja Riskey, works for AT&T. They have a charitable giving program called AT&T Pioneers and she is the 2nd VP for her local chapter in North Texas. Her fellow council members know she suffers from Relapsing Polychondritis so when Sonja approached them and asked if they would be willing to make a donation they were more than happy to do so. We are pleased to announce that because of Sonja’s willingness to simply ask for their help the RPASF, Inc. was the recipient of a $1,000.00 donation from TelcomPioneers Texas Pride Chapter #22! There are thousands of corporations out there with similar programs just waiting for charities, especially ones that benefit their employees, to donate to. In fact, most of these donations are made at the request of their employees. Some companies may make cash donations, some may run incentive programs to raise money for a cause and others may do something as simple as setting up a table in the lobby or cafeteria asking for donations. Employers are often more than happy to help and in fact may have funds that they must use each year and are looking for ways to use those funds before they are lost. Getting involved with your companies charitable giving program can not only help our foundation, it can also be a great way to show your employer your willingness to become involved in helping the community as a whole and your desire to shine a positive light on your company. So please, take a moment to look in to the programs that might be available at your company. Ask your HR department or supervisor if your company has a charitable giving program or participates in any type of charitable fundraising. Getting donations may be as easy as just asking and giving them our site information. Others, however; may require more information. No need to worry. We will provide you with all of the documentation you will need. All you have to do is contact us at firstname.lastname@example.org with the details and we will get all of the necessary information to you right away. This is a very exciting time for our foundation and receiving these types of donations is critical to our growth and therefore our ability to really make a difference. Please, take a few minutes to look in to what your company, or even your friends and family members’ companies, may have to offer. This could be your chance to leave your mark on the cause. Thank you, Your Team At RPASF, Inc.
RPASF, Inc. joins Amazon Smile and eBay Giving Works
You can now support the Relapsing Polychondritis Awareness and Support Foundation, Inc. at little or no cost to you by linking to us in their Charitable Giving Programs. Here’s how it works!
Share a Smile With Us on Amazon Smile
- Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the RPASF, Inc.
- AmazonSmile is the same Amazon you know. Same products, same prices, same service.
- Support the RPASF, Inc. by starting your shopping at smile.amazon.com
Partner up with us on eBay Giving Works
eBay Giving Works
The combination of PayPal Giving Fund’s nonprofit expertise, plus eBay’s active global community, forms the eBay Giving Works program. It allows sellers to give proceeds from their sales to a favorite nonprofit, and helps nonprofits raise funds by selling on eBay too. Nonprofits can also receive donations on eBay through Donate Now which lets anyone with a PayPal account donate to nonprofits right away –without buying or selling anything.
Or by Check to:
PO Box 369 Anoka, MN 55303
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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
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