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Everything posted by eileenbunny

  1. eileenbunny

    2019 Patient Conference

    Hi all, Here's an updated list of speakers. More to come. Dr. Brian McGeeney Dr. Elizabeth Loder Ms. Christina Treppendahl Ms. Nicole Hemmenway Dr. Emmanuelle Schindler Mr. Kevin Lenaburg Dr. Nate Bennett Dr. Mark Burish Dr. Shivang Joshi Mr. Dennis Pohlenz Mr. William Mingus Mr. Bob Wold Mrs. Eileen Brewer
  2. eileenbunny

    2019 Patient Conference

    14th Annual Cluster Headache Patient Conference Talent Show September 19, 2019 We are excited to showcase some of the most talented Clusterheads at this year’s conference. If you sing, dance, play an instrument, or do anything else exciting (and suitable for an audience), we want you to audition! Please send your video to Timf1913@aol.com by July 15th, 2019. The top 10 will perform on Saturday, September 21, 2019 during the Clusterbusters Farewell Dinner. You must be available and plan to attend the conference in order to apply. We may be limited in the A/V equipment we can supply so please plan accordingly. We will post results of the auditions on Facebook and our website event page on July 30, 2019. We will also be providing a display area for anyone that wants to display their talents. Let Tim know at the above email address if you’d like to display your visual art. Space may be limited. We’ve witnessed a lot of great talent over the years and we’d love to have you share it with the rest of the community. Let’s show The Beast what we can do!
  3. eileenbunny

    2019 Patient Conference

    Last call for scholarship applicants for 2019! http://survey.constantcontact.com/survey/a07egblmkkijvi3qm71/start
  4. eileenbunny

    2019 Patient Conference

    To be fair, I thought I was going to get to the scholarship application in April as well. RetreatMigraine took too much of my attention away from you all. I'm sorry.
  5. eileenbunny

    2019 Patient Conference

    The scholarship application for the 2019 Clusterbusters Conference in Dallas, TX is now available by following this link: http://survey.constantcontact.com/…/a07egblmkkijvi3qm…/start We hope to see you there!
  6. eileenbunny

    2020 Conference

    Hi everyone, Clusterbusters would like your help determining what locations work best for you for conferences. We have a very short, 4 question survey which will take about 2 minutes to complete. We'd really appreciate the feedback. Thanks. https://goo.gl/forms/0zPHwUC2Hll6JR8C3
  7. eileenbunny

    2019 Patient Conference

    Yes, registration will be open until the event and people can even register on site. You will have plenty of time even if you wait for the scholarship. If you would like to attend, you may want to reserve a hotel room though. Those tend to go quickly. You can always cancel in June in the unfortunate event that you do not receive a scholarship and cannot attend.
  8. eileenbunny

    2019 Patient Conference

    Yes, we will be opening scholarship applications in April and they will be awarded by the end of May.
  9. eileenbunny

    2019 Patient Conference

    Good afternoon. Registration is now open for the 2019 Clusterbusters Conference in Dallas, Texas. Please follow this link for more information and to register.
  10. eileenbunny

    2019 Patient Conference

    Hi everyone. I just wanted to give a heads up that registration is set to open this week. Please keep an eye out for an email and an announcement here.
  11. Please ask questions here. I will try to answer them in a more timely manner than last year. I'll have help this year as well. You can also message me on Facebook (eileenbunny) or email at conference@clusterbusters.org. We are so excited for DENVER!!! - Eileen
  12. I will ask Ashley to do a wrap-up and post some pictures.
  13. If you are looking to share a room for the conference, post about it here or contact someone who has posted here to get together. I will try to facilitate discussion.
  14. Yes, there will be a syllabus at the conference, and we've been releasing brief bios about the speakers on FB and Twitter. We're still doing them at about a pace of one a week. We are picking up the pace now as the conference gets closer. Please remember though, this isn't a technical conference. This is a patient conference. This is a space for patients, caregivers, and supporters to learn, but also a space to bond. We are not as formal as a technical conference because that isn't the right atmosphere for forming the type of family style connections that are integral to making this conference a success.
  15. I am going to be sending out an email to all those who have registered for the conference in a couple of days and it will include transportation information. I'm sorry I haven't gotten to this yet. I will also be posting it on the conference page.
  16. Hi everyone, I'm sorry I haven't checked in. It's been a rough summer. Our conference is less than a month away. Here's an updated list of speakers and a draft of the agenda although this isn't the final yet, so I'm only posting it here and not everywhere yet. I'm pretty excited about our lineup. One note is that we will be having some program activities on Thursday which is new for us other than the registration and reception. There will be an oxygen demonstration before registration for those that would like to learn about it prior to the formal beginnings of the conference and consider signing out a tank. Also, during the reception we'll have some announcements and possibly a speaker. Check it out. Also, to the person that asked about scholarships like a month ago and I didn't respond to, yes, the deadline to apply had long since past. I'm very sorry. We generally try to award scholarships by the beginning of June at the latest so that people have plenty of time to make travel arrangements while fares are at their lowest. Here is the list of speakers we have confirmed at this point: Dr. Brian McGeeney Dr. Larry Schor Mr. Eric Diamond Ms. Valerie Nivar Mr. Mark Massullo Mr. Andrew Cleminshaw Dr. Joanna Kempner Mrs. Ginny Hall Dr. Emmanuelle Schindler Mr. Dan Ervin Mr. Bill Mingus Mr. Carey Turnbull Dr. Mark Burish Mr. Stuart Pearson Mr. Jeff Handibode Dr. Christopher Gottschalk Dr. Shivang Joshi Mr. Bob Wold Mrs. Eileen Brewer 2018 Conference Schedule - Sheet1 (3).pdf
  17. 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
  18. 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.
  19. 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/