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eileenbunny

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    2018 Clusterbusters Patient Conference Denver

    in Advocacy, Events and Conferences

    Posted

    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

    2018 Clusterbusters Patient Conference Denver

    in Advocacy, Events and Conferences

    Posted

     

    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

     

     

    Oxygen and CMS

    in Advocacy, Events and Conferences

    Posted

    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.

    • Like 2

    2018 Clusterbusters Patient Conference Denver

    in Advocacy, Events and Conferences

    Posted

    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/

     

     

    • Like 1

    2017 Conference Room Share Thread

    in Advocacy, Events and Conferences

    Posted

    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

    • Like 1

    2017 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    On 2/3/2017 at 6:15 PM, Christine Finngaard said:

    I spelled my last name wrong on the registration-form for the September conference in Chicago 2017...

    My last name is FINNGAARD. Anyone who can help me change it to my correct name?sorry!♡♡♡

    Best regards Christine Finngaard

    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?

    2017 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    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


     


    w97ZRF0.jpg

    • Like 2

    2016 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    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.

    2016 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    I was trying to get hotel room and they claim to be full using CB link.  Is this others experience.  If full alternative suggestions?

    Thanks

     

    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.

    2016 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    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

    2016 Clusterbusters Conference

    in Advocacy, Events and Conferences

    Posted

    Ok, I just had a crazy brain storm (Didn't hurt too bad :)).  I'd like to put a suggestion in the box for a future CB conference in St Pete / Clearwater, FL. :)  I'd be happy to coordinate Dive / Fishing / Boat rides.  I know 3 to 4 guys I could rope into providing offshore boats :)

     

    J

     

    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.  

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