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LUPUS RESEARCH FOUNDATION MEDIA KIT 720 470 8049 [email protected] www.letscurelupus.org
Dear valued members of the Media,
We are so pleased you want to learn more about our organization. It is with the media’s help we have achieved success. Thank you. We are excited to work with you.
We are the Lupus Research Foundation (LRF). And we run the largest curling Professional- Amateur tournament in the United States, called the “Lupus Spiel”. The Lupus Spiel began in Blaine, Minnesota, and after five years, curlers have raised nearly $300,000! This past year Lupus Spiel USA raised $100,000 alone.
We are proud to expand our mission by adding a second location: Seattle’s beautiful Granite Curling Club!
Please consider covering this event. It’s Nov. 2-4, 2018.
My name is Regan Birr, and I am the founder of the LRF. I have lupus, and my husband, World Bronze Medalist Todd Birr, and I do this because we don’t want to see another young girl have to go through what I went through.
The LRF raises money for LUPUS RESEARCH. We fund ONE researcher. Dr. Timothy Niewold’s goal is EIGHT YEARS TO A CURE. He is Director of the Colton Center for Autoimmunity at NYU’s Langone Medical Center. He will be at the curling club all weekend and would love to share with you.
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Kevin Martin, the greatest curler of all time and two-time Olympic Medalist, will conduct two clinics at the Granite on Thurs. night, Nov. 1, and Fri. afternoon, Nov. 2. Feel welcome to cover this as well.
The stars of the bonspiel will be Seattle’s wealth of accomplished curlers: Cristin Clark (multiple national champion), Sharon Vukich (World Bronze medalist), Lyle Sieg (World Gold medalist), Em Good (national champion), and more. The Spiel will feature Olympic Bronze medalist Shannon Kleibrink from Canada, and Pat Ryan, World Gold medalist and one of the most acclaimed curlers of all time (also from Canada).
The Granite Curling Club is located at: 1440 North 128th Street, Seattle, WA 98133.
Thank you for your help!
Sincerely,
Regan
Regan Birr Founder & Executive Director Lupus Research Foundation Minnesota www.letscurelupus.org 720 470 8049 [email protected]
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Table of Contents:
Our MISSION and VISION 2 What sets us apart 2 FACT SHEET 3 Regan’s story 3 WHO WE ARE (executive bios) 4 Our amazing background and history 5 Promotional materials 5 Past press coverage 6 Quote sheet 10
APPENDIX: 11 Goals for revenue and expansion Fun things we do Future plans Ask Upcoming Dates / Events
Our Mission and Vision: Mission: the mission of the Lupus Research Foundation is to help find a cure for lupus by raising funds for lupus research and by raising awareness. Vision: 8-years-to-a-cure. 93% of the donor’s dollar goes toward our missions.
What Sets Us Apart From Other Lupus Organizations: We are: 1 patient-run: living with lupus, our founder understands the urgency for a cure 2 focused on a cure: more money goes to research compared to other organizations because we have very little overhead (we’re small but mighty). Also, we are FOCUSED on 8 years to a cure 3 world-wide: our events are internationally known 4 inclusive: we give our partners freedom to do great work
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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We Want You to Know (Fact sheet):
Facts about lupus:
Lupus is a life-threatening auto-immune disease. The body’s over-active immune system attacks healthy tissue (including organs). One in 210 Americans has lupus. That is 1.5 million. It is more prevalent than AIDS and MS combined. There are 5 million people with lupus worldwide. It mostly affects women (90%), it targets people of color, and usually strikes between the ages of 15 and 45.
CHANCE OF LONG-TERM REMISSION is only 3% (after being very ill). Regan is the EXCEPTION, not the RULE. That’s why we need to fight.
The challenges lupus patients face: daily fatigue, joint pain, life-threatening circumstance.
Facts about the LRF:
LRF is a non-profit, tax exempt 501(c)(3) organization. Its federal tax ID number is 81-5446248, and it was formed Feb. 19, 2017.
OUR RESEARCHER is world-renowned. Collaborative. Laser-focused. TARGETING 8-years-to-a- cure.
Our researcher is involved in multiple drug developments.
He directs the Colton Center for Autoimmunity, and previously worked as a research rheumatologist at the Mayo Clinic in Rochester, MN.
Regan’s Story: Regan has WHO Class IV diffuse proliferative glomerulonephritis. She achieved (technical) remission by early diagnosis and the proper choice of therapy (2.5 years of cyclophosphamide (“Cytoxan”), a breast cancer chemo (even though she did not have cancer) which was used to suppress her over-active immune system (get it to stop attacking her kidneys).
Regan’s recovery took about 10 years. So the next 8 years is focused on A CURE.
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Regan is still on prednisone and deals with joint pain, but it has gone from keeping her up at night and forcing her to walk with a cane to a low level, so she can live a full, active life.
Others aren’t so lucky. Regan falls in the 3% category. That’s why she and her team are determined to find a cure. They’ve also listened to patient-feedback. Together, they’ve determined that this is the best way to ensure other young women (and men) won’t go through what Regan did.
Regan has a friend with the same kind of kidney disease. Regan was saved; her friend wasn’t. Her friend recently was able to receive a living donor kidney. Without it her prognosis was approximately 8 more years of life.
That’s why research for a cure is needed and will save lives.
WHO WE ARE:
Along with Regan, we have an amazing group operating the LRF: Execs: Co-founder Todd Birr, World Bronze medalist (skip) of the Men’s curling team 2007, co-founder of the Lupus Spiel Carrie Benton, Lupus Spiel organizer and long-standing member of the curling community Dr. Neil Kay, board member, national champion curler, and hematologist at the Mayo Clinic, Rochester, MN Kim Leppanen, Vice President for Wells Fargo Capital Finance Brian Grabowski, avid curler, and Director of Account Relationships at KPMG Advisory Services
Committee leads: Andrea Fierst, Volunteer of the Year at Four Seasons Curling Club Don Hoffman, Lupus Spiel planner Craig Nicko, Creator of the Mulligan and Buy-a-Tie fundraisers Sonny Roberge, speaker Team Lupus: volunteers who operate Lupus Spiel USA and advise LRF
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Our Amazing Background and History:
The LRF formed based on the success of the Lupus Spiel. Lupus Spiel USA raised nearly $300,000 in five years due to the amazing support of curlers. Curlers care. The LRF was formed to: host the Lupus Spiel, and to expand the mission: increase funding for lupus research by creating other events and endeavors.
Lupus Spiel USA is the Blaine, Minn. Location of this curling pro-am that pairs World class curlers and Olympians with amateur curlers. It is now the largest curling pro-am in the United States.
The event has quickly become world-known, and brings in the best curlers in the world.
Already, more has been given to lupus research than other organizations with bigger budgets.
Promotional material: Visit www.letscurelupus.org and look for:
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Past Media Coverage
Kare 11 2017 featuring two-time Olympian, Jessica Schultz: http://www.kare11.com/sports/curlers-raise-money-for-a-good-cause-in-blaine/439378872
North Metro TV 2017: https://www.youtube.com/watch?v=YghOE1itoHA&spfreload=10
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Fox 9 Featuring Olympic Gold Medalist (Canada) John Morris, 2015: https://www.youtube.com/watch?v=GH6UvyZ5Da8&t=33s
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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CurlingZone: http://www.curlingzone.com/post.php?postid=1854
Mayo Clinic, 2016 beneficiary, national publication: http://intheloop.mayoclinic.org/discussion/curling-for-a-cause-lupus-spiel-usa-raises-funds-for- research/
North Metro TV 2016: https://www.youtube.com/watch?v=ck6uBQarPZM
Kare 11 piece on Regan and how she stays fit while living with lupus: http://www.kare11.com/entertainment/television/programs/kare-11-sunrise/finding-fit-in-the- face-of-lupus/408579429
Regan showing curling to Kare 11’s Melissa Colorado and Alicia Lewis: http://www.kare11.com/entertainment/television/programs/kare-11-sunrise/frozen-fridays- curling/33127392
Podcast: https://soundcloud.com/stonecast/regan- birr?utm_source=soundcloud&utm_campaign=share&utm_medium=facebook
http://abcnewspapers.com/2016/05/11/pro-am-curling-tournament-aims-to-help-fight-lupus/
http://northmetrotv.com/news-headlines/lupus-spiel-2016/
http://shellbrookchronicle.com/wp-content/uploads/sites/2/2016/06/June-24-a.pdf
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
10 http://www.kare11.com/story/entertainment/events/coffee-with-kare/2014/04/23/lupus- spiel-usa/8065049/
http://abcnewspapers.com/2014/05/05/distinguished-curlers-team-up-with-fundraisers-for-a- good-cause-at-four-seasons-curling-club/
http://northmetrotv.com/news/newsitem.aspx?newsid=748&newsitemid=7752
http://northmetrotv.com/news-headlines/lupus-an-unknown-killer/ https://www.youtube.com/watch?v=GH6UvyZ5Da8
https://philanthropy.mayoclinic.org/LupusSpielUSA
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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Quote Sheet:
Regan: we are determined to find a cure; we are counting down the days.
Dr. Timothy Niewold, lupus researcher: we’re here to help solve this puzzle. We are working hard to eradicate this disease, and the good news is that the end is in sight. It’s a challenging goal, and we can do it.
Todd Birr: we fight the good fight because we’ve seen the devastating damage lupus can do to its patients and loved ones. We have hope for the future.
Jean O’Connor, Lupus Spiel participant: the Lupus Spiel was a blast – a weekend filled with crazy, fun curling to raise money for a great cause. I highly recommend it!
Gabe Nickel, Lupus Spiel participant: Awesome experience. A well organized and fun event. The Lupus Spiel is a MUST on any curler’s bonspiel to-do list.
Trevor Bonot, Lupus Spiel Celebrity Skip, skip (team captain) of the Canadian Mixed curling champions, and silver medalist at Worlds in Mixed curling, 2017: I have been going to the Lupus Spiel for several years now and it’s always a great time for all the curlers! I have made so many friends over the years – not only my teammates, but the other participants as well. And of course I love seeing how much money we can raise for a great cause!
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org
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APPENDIX
Goals for revenue and expansion: We plan to be at $250,000 in revenue for fiscal 2019 and expand our organization We envision crossing the border to Canada with the Lupus Spiel in 2020 and going overseas as well We will expand to offer an educational seminar for lupus patients, and a “Lupus Camp”, where patients will be immersed for 6 weeks in a program teaching “Healthy With Lupus”: -diet guides -exercise programming -counselling
Fun things we do to complete our mission at the LRF: Curling partnerships! Dinner with celebrities! Crazy polar plunges!
FUTURE PLANS: incorporate a celebrity spokesperson!
Can you help us? We’d like to partner with a CELEBRITY spokesperson to really get our name out there! Can you help us get connected? Would YOU like to be the face of our organization? We’d love to work with you!
They say that EVERYBODY KNOWS SOMEONE WITH LUPUS. Please search your soul to see how you can help those touched by lupus in your life.
Upcoming dates: May 3-5, 2019: Lupus Spiel USA, Blaine
Lupus Research Foundation, Minnesota 720 470 8049 [email protected] www.letscurelupus.org