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eileenbunny

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Everything posted by eileenbunny

  1. Clusterbusters is pleased to offer travel scholarships for our 13th Annual Patient Conference. If you need assistance in order to attend this exciting, educational, and life-changing event, please consider applying. We won't be able to accommodate everyone, but we will do our best to help as many as possible. If you have the means, please consider donating to our scholarship fund. https://clusterbusters.org/donate/ Thank you. http://survey.constantcontact.com/survey/a07efb7msxfjg3r03rv/start
  2. eileenbunny

    Oxygen and CMS

    Clusterbusters is happy to share this letter from Representative Andy Harris regarding our work in attempting to get CMS to change their decision regarding oxygen coverage for Medicare and Medicaid patients. We believe this letter moves us much closer to achieving our goals in this endeavor. We will keep everyone posted. This letter is the result of years of hard work by many dedicated advocates. bit.ly/2EJnRfK One major factor in getting this across the finish line is the data being collected in our survey that can be found here:https://westga.co1.qualtrics.com/jfe/form/SV_cG8Ym1FW8fgs44t If you haven't yet filled it out, there is still time as the survey closes on the 20th of April. If you are over 65 years of age and have used oxygen to treat your clusters, your data is even more important. Please take the time if you can.
  3. As for altitude, there's actually a thread about this from several years ago that might give some hope and guidance. We also have a regional support group in Denver that may be able to offer some tips and advice. Also, while we hope that you won't need it, oxygen will be available at the conference for everyone. Please bring a regulator, mask, wrench, and whatever else you use as we will just be supplying the tanks. Please bring your items even if you are not in cycle just to be on the safe side. https://clusterbusters.org/forums/topic/577-altitude-effects/
  4. Unfortunately at this time there is not a streaming option and we do not foresee adding one in the future. We may make some of the presentations available after the conference, but due to the need to keep the conference private and protected for all attendees, we don't allow live streaming or video recording in the conference space other than for official purposes.
  5. eileenbunny

    #CHtalk

    Join Ashley Hattle in just a couple minutes on Twitter #CHtalk for the first monthly tweet chat to raise awareness about cluster headaches.
  6. The 12th Annual Clusterbusters Patient Conference will be in Chicago, IL from September 14th - 17th, 2017. Details and registration coming shortly.
  7. Hi everyone. Our room block is nearly booked at the conference hotel, the Embassy Suites Chicago, O'Hare. While we do have a block at another hotel, the Comfort Inn - O'Hare Convention Center which is about 2.5 miles away, I'm sure there are some that would like to stay close. The Embassy Suites is an all-suites hotel which means that each of our guest rooms is a 2 room suite with a bedroom and a living space with a pull out couch. They all sleep 4-6 people. If you have a room and are willing to share, please post here. You are welcome to post specifics like you are only willing to share with a female, or someone who doesn't snore, or someone who doesn't laugh hysterically in their sleep for no apparent reason(guilty). Obviously room sharing also cuts down on costs for everyone! If you are looking for a room to share and do not have one yet, this is a good place to post as well. Please feel free to contact me at conference@clusterbusters.org with any questions. - Eileen
  8. eileenbunny

    New Cluster Headache Research Study - Science 37

    This study has been opened to everyone in the US, not just residents of NY and CA.
  9. eileenbunny

    2017 Clusterbusters Conference

    Hey there, I'm sorry I forgot to follow up on this but I did update your registration. Sorry for the delay in getting back to you. Two months isn't so bad...right?
  10. eileenbunny

    2017 Clusterbusters Conference

    Don't Miss the 12th Clusterbusters Conference!! This year's conference will start with registration and the President's Cocktail Reception on Thursday, September 14, 2017 at 5:30 PM. The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 6pm. A farewell dinner will follow. Registration link: http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07edp1qq7m9f077a1c
  11. Clusterbusters is very excited to announce the dates and venue for the 2016 Conference. Dates: September 15-18 Location: The Holiday Inn Austin Midtown - 6000 Middle Fiskville Rd, Austin, TX 78752 Those that have attended before will tell you what an amazing experience this is. This is an opportunity to bond in a unique way with those that really understand. There will also be updates and reports on advocacy efforts, education, and the latest information on current research. You don't want to miss it! We will have lots of future announcements about the schedule, speakers and events planned, so stay tuned. Rooms, Rates, and Registration: We have arranged a block of rooms starting at $119 per night. In early January we will open up registration and provide a link for booking the hotel. We have been able to keep the registration fee the same at $125 for attendees and $95 for spouse/companions. We hope to see a lot of you in Austin! Eileen Conference Chair
  12. eileenbunny

    2016 Clusterbusters Conference

    The conference is only a few days away. Here is some useful information to help you along the way: Transportation: This hotel does not have a free airport shuttle. They recommend using SuperShuttle. One way is $17 and round trip is $32. Cab fare is about $30 one way. Capitol Metro, a public bus service, offers and express route for $3.00 from the airport to downtown Austin. Once in downtown, one can either transfer to the bus route that will bring them directly to the southease corner of the Holiday Inn property or catch the MetroRail. The red line has a stop at Highland, which is approximately 1/4 mile behind the hotel. The fee for the rail is $1.50. Of course, there are also ride share programs. Uber is not available in Austin but here is a list of ride share companies that comply with Austin's regulations. Oxygen: Oxygen will be available throughout the conference. There will be a setup near the main conference room for use during the day. There will also be tanks stored in our hospitality suite that you can sign out for use during the conference. The welcome brochure you receive when you check in will have more information about this. Please bring your own mask, wrench, and regulator. We may not have any available for use. Event Group Photo: The group photo will take place on Saturday morning. Some people wanted a purple day, so we think this would be the best day to wear purple if you choose. Also, bring a hat to the conference. We would like to do an Under the Hat group photo. Auction Items: If you plan to donate something to our auction or raffle, THANK YOU!!! There will be a table next to registration for you to donate and there will be a donation form for you to fill out there. We must have all items by the start of the program Friday morning. If you need to ship an item in advance, please email us at conference@clusterbusters.org for the address. Please feel free to contact me with any further questions you may have at conference@clusterbusters.org. I will do my best to get back to you promptly.
  13. eileenbunny

    2016 Clusterbusters Conference

    Check out our Inspiration Austin Logo contest on the event website! https://clusterbusters.org/event/clusterbusters-conference/
  14. eileenbunny

    2016 Clusterbusters Conference

    I recommend calling them directly and finding out if there are more rooms available. If so they will extend our group rate to you if you give them the code CPC. If not, I'll be negotiating a block at the hotel next door. I'll be researching this today.
  15. eileenbunny

    2016 Clusterbusters Conference

    Last chance to enter our Inspiration Austin contest. The last finalist will be announced on August 1st and then we will be choosing a winner! We want to hear your story. https://clusterbusters.org/clusterbusters-inspiration-austin-2016/
  16. eileenbunny

    2016 Clusterbusters Conference

    Also, I do apologize for the delay in awarding scholarships. I'm not sure what I was smoking when I picked a due date in the middle of the AHS conference for getting back to people. You'll hear from me one way or the other by the end of the week.
  17. eileenbunny

    2016 Clusterbusters Conference

    Thanks for posting the link for the hotel again! Just fyi, the group code is CPC. As for O2, yes, there will be O2 available and you will be able to sign out tanks to take to your room or you can just stop by our hospitality suite and pick it up any time. My room will be adjacent to the hospitality suite and you should not feel bad about waking me up for access. I will be giving everyone more information about this in the welcome packet you will receive when you check in at the hotel. If you aren't staying at the hotel, please let me know and I can get a welcome packet to you. I will be sending all of this information out via email prior to the conference as well for all those who have registered. - Eileen
  18. eileenbunny

    2016 Clusterbusters Conference

    Sorry I haven't checked in in a while! The scholarships will be awarded by June 10th. Also, please check out the conference portion of the website for updates and a big congrats to Eric Cohen for being our first finalist in our Inspiration Austin Contest
  19. eileenbunny

    2016 Clusterbusters Conference

    Due to interest and requests, we have extended the deadline for the Inspiration Austin Contest. If you didn't get your submission in, we will still be accepting them for a little while longer. Please consider doing this as quickly as possible though!
  20. eileenbunny

    2016 Clusterbusters Conference

    If you plan to attend or even think you might plan to attend the Clusterbusters Conference, book your hotel room early. You can always cancel your room without penalty, but room availability is going to get tight. Book early! http://events.r20.constantcontact.com/register/event?oeidk=a07ebp2jbca9e8a3010&llr=asfwt7iab
  21. eileenbunny

    2016 Clusterbusters Conference

    It's funny, I just got some mail from their CVB with information about having a conference in that area. I think it's a great idea, but it might be prohibitive for our friends on the left coast.
  22. eileenbunny

    2016 Clusterbusters Conference

    We have added a theme to the conference, and this year’s theme is INSPIRATION. To learn more and find out about participating through a contest or in other ways, follow this link. https://clusterbusters.org/clusterbusters-inspiration-austin-2016/
  23. eileenbunny

    2016 Clusterbusters Conference

    Hi there, some others may be able to answer this better than me. I've only been once, but I coordinate the event so I'll see if I can help. The first thing you should expect is a ton of hugs. You can also expect to be in a room full of people that 'get it' in a way that you have never experienced before if you haven't been in a room full of cluster headache patients and their supporters. It's really amazing. In addition, there's a cocktail hour on the first night, then 2 days of speakers and presentations usually from about 9 am to 5 pm with breaks and lunch. Lunch is usually included in the conference registration for one of those days. Coffee and tea provided both days. The last day people generally get together for breakfast and then head home or off to do touristy things. I hope this helps. You can email me with other questions at conference@clusterbusters.org.
  24. eileenbunny

    2016 Clusterbusters Conference

    Hi all, here's a quick update on some scheduled speakers! Mr. Bob Wold, President of Clusterbusters Mrs. Eileen Brewer, Conference Chair Mr. Dan Ervin - MC Mr. Pete Batcheller Dr. Brian McGeeney Dr. Robert Cowan Dr. Larry Schor
  25. eileenbunny

    2016 Clusterbusters Conference

    Registration is open! We hope you will join us. http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07ebp2jbca9e8a3010
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