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eileenbunny last won the day on January 6

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  1. I will ask Ashley to do a wrap-up and post some pictures.
  2. 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.
  3. 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.
  4. 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
  5. 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
  6. 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.
  7. 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/
  8. 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.
  9. 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.