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It’s Time for a RP Road Trip!

Greetings from everyone here at the RPASF, Inc. (www.polychondritis.org). Since the onset of applying for our 501(c)(3) tax exempt status we have become an active advocate in the rare disease community and have begun to be included in other organizations such as RDLA, AARDA and Global Genes events and advocacy opportunities. As a result of this activity, our Chairman/CEO Tom Christie is going on a six week road trip. He will begin in August by participating in the RDLA’ s In District Lobby Days by first attending their on-line preparatory seminars and then meeting directly with Senator Amy Klobuchar (D-MN) and tentatively with Senator Al Franken (D-MN) along with Congressman Erik Paulsen (R-MN) of the House of Representatives in there offices in Minnesota. The topic of the meetings will be rare disease legislation and of course in our case featuring Relapsing Polychondritis in particular.

Next comes the fun part. On Sept. 9th Tom will be attending the AARDA‘s National Coalition of Autoimmune Patient Groups (NCAPG) Summit meeting in Washington, D.C.  The purpose of this meeting will be to develop priority advocacy issues and other projects that will be beneficial to members in the future.

The following morning, Sept. 10th Tom will fly directly from D.C. to Huntington Beach, California to attend the Global Genes 3 day RARE Patient Advocacy Summit and Tribute to Champions Gala. The extensive details of the agenda can be found at http://globalgenes.org/2014-summit-agenda/. Then Sunday morning he will drag himself home for we’re sure some much needed rest.

Invitations to these events are in direct response from these three organizations being willing to help give us a leg up as we begin our journey on the road to Awareness, Diagnosis and Treatment for RP on a large scale.

How You Can Help – You can gift us Southwest Airlines Rapid Rewards Bonus Points and receive a 40% bonus for yourself!

Points can be transferred in blocks of 500 with a minimum initial transfer of 2,000 points and a daily maximum of 60,000 points. Offer good thru July 31st.Check it out here!

http://www.southwest.com/rapidrewards/points-center?00RRFEAPRO1POINTS140725

Points may be donated in minimal blocks starting at 1,000 also without the promotion.

These are the first of some big opportunities coming our way now that we have applied for our 501c3 status.  As you all know, the purpose of this group is first and foremost to spread awareness.  The best way to do that is to attend conferences where we can make direct contact with people in the medical community and corporate sponsors and tell them who we are and what we are about. Along with meetings with members of congress, we have been fortunate enough to receive invitations to two such conferences.  One is in D.C and the other in Huntington Beach, California. While we are thrilled to be invited, the conferences are in mid September and that leaves us very little time to get together the funds needed to send our representative, Tom.  There are four things that we need to cover; airfare, hotel, food and transportation.  We have been blessed to receive two travel stipends from these organizations, one for $500 from AARDA and one for $250 from Global Genes. While that seems like a good amount, it unfortunately is not enough to cover all of our expenses.  After much discussion, the board has a plan to hopefully cover all of our expenses without touching any of our funds.

Southwest Airlines has a rewards points system that allows for the transferring of points.  Our hope is that some of our amazing members are also members of the SW Rewards program and will be willing and able to donate enough points to cover a ticket or tickets.  This is a three legged trip so we need three tickets.  The best case scenario is if one person has enough points to cover a ticket in full.  That way they would just use their points and purchase the ticket for us.  If no one has or is willing to donate that many points we can hopefully get enough smaller, combined donations to cover one or more tickets.  There is one downside to transferring points.  It costs $10 for every 1,000 points transferred.  So, if it takes more than one person to cover the 9,000 points for one flight, we would have to pay $90. Obviously, that’s still cheaper than buying the ticket with cash but no fee at all would be ideal.  If there is a fee involved, the foundation will cover that cost.  Below I will list the flights, the approximate points needed and the approximate cash value of each ticket.  While we are asking for points, cash donations are always needed and appreciated.  If we can get airfare covered by donations, that will leave us the $750 stipend money to cover lodging and other expenses.

If you’ve ever thought of making a donation but didn’t know how or wanted to donate and see your donation in action, now is the time! Keep in mind that this is a huge opportunity to get our name out there and to put RP on the map.  Please, dig deep.  Ask friends, family or even employers for their help.  If you decide that you would like to make a donation please contact me (Amanda Feexico) afeexico@polychondritis.org and I will let you know what steps to take. Although we are not asking for cash, donations will be greatly appreciated and can be made below.

Because of the constantly increasing rates of airfare, we have a very small window of opportunity.  This donation request will only last for 7-10 days.  At that point we will have to make a move and book the flights less risk paying even more.  If you have any questions about donating or about the events we are sending our representative to, please feel free to contact me or Tom Christie tchristie@polychondritis.org and we will be happy to answer any questions.

Flight 1: 8500pts, $148

Flight 2: 10,500pts, $188

Flight 3: 14,260pts, $242

Thanks to you, and for the support we receive. We wouldn’t be here without you!

The RPASF, Inc. Team

www.polychondritis.org

Click Here to Make a Monetary Donation



Or by mail at:

RPASF, Inc. P.O. Box 369 Anoka, MN 55303

Pediatric

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Our Latest Outreach Support Group

Pediatric Relapsing Polychondritis (Closed Group)


https://www.facebook.com/groups/352506518232793/

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

https://www.facebook.com/polychondritisawarenessandsupportfoundationinc

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