Jump to content
ClusterBusters

eileenbunny

Moderators
  • Content count

    58
  • Joined

  • Last visited

  • Days Won

    3

Reputation Activity

  1. Like
    eileenbunny got a reaction from ThatHurtsMyHead in 2020 Conference   
    Hi Rox, we do offer travel scholarships every year to help those who find it financially straining to attend. They aren't always full scholarships, but they can help offset travel/registration costs.
  2. Sad
    eileenbunny got a reaction from Into Light in 2020 Conference   
    We will most likely be heading to the east coast sometime in the next three years. It will probably not be Atlanta though.
  3. Like
    eileenbunny reacted to spiny in 2019 Conference how is/was it?   
    It was my first conference. Amazing!!!! It was a joy to meet so many members after all these years. Having the opportunity to talk to new people was terrific. It was super special to be able to talk to them in person and perhaps provide a bit of new information.  
    It was a lot of information to absorb over two days! 
    I was more than shocked to have some people come up to me and say " I know you spiny!!!!'  Yes, I finally came off my mountain! Shadowed a bit for a day, but otherwise, I had no issues with a cycle starting there or when I got home. 
    Many thanks to Bob for making this happen! And thanks for pushing me to go!  
  4. Like
    eileenbunny reacted to Txfire in 2019 Conference how is/was it?   
    This was my first year. 21 years I’ve felt alone in this battle. This year reached one of the lowest points and decided I needed to go. Left with a renewed hope and lots of information. Above all though,  after 21 yrs... not alone in this anymore. I can’t put into words the freedom that comes with that. Thank you to all who spent countless hours teaching me, listening to me,  and genuinely showing concern.   I’m sure to be back next year in Chicago
    Ben
     
     
  5. Like
    eileenbunny got a reaction from Into Light in 2020 Patient Conference in Chicago/Rosemont Discount   
    As we announced at the conference this week, next year we will be back in the Chicago area. If you register before September 28, you can receive the 2019 prices. Register here http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07egkpa2ek0382d233. We can't wait to see you next year!
  6. Thanks
    eileenbunny got a reaction from Racer1_NC in 2019 Patient Conference   
  7. Like
    eileenbunny got a reaction from Brain on fire in 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
  8. Like
    eileenbunny got a reaction from Brain on fire in 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
  9. Like
    eileenbunny got a reaction from Brain on fire in 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!
  10. Thanks
    eileenbunny got a reaction from Chronic2017 in 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
     
  11. Thanks
    eileenbunny got a reaction from Brain on fire in 2019 Patient Conference   
    Yes, we will be opening scholarship applications in April and they will be awarded by the end of May.
  12. Thanks
    eileenbunny got a reaction from Into Light in 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.
  13. Thanks
    eileenbunny got a reaction from Racer1_NC in 2019 Patient Conference   
  14. Thanks
    eileenbunny got a reaction from Racer1_NC in 2019 Patient Conference   
  15. Like
    eileenbunny got a reaction from CHfather in 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.
  16. Like
    eileenbunny got a reaction from Tony Only in 2018 Clusterbusters Patient Conference Denver   
    I will ask Ashley to do a wrap-up and post some pictures.
  17. Thanks
    eileenbunny got a reaction from Racer1_NC in 2019 Patient Conference   
  18. Thanks
    eileenbunny got a reaction from Racer1_NC in 2019 Patient Conference   
  19. Like
    eileenbunny got a reaction from Ricardo in 2018 Clusterbusters Patient Conference Denver   
    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
     
  20. Like
    eileenbunny got a reaction from Ricardo in 2018 Clusterbusters Patient Conference Denver   
    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/
     
     
  21. Like
    eileenbunny got a reaction from Ricardo in 2018 Clusterbusters Patient Conference Denver   
    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.
  22. Like
    eileenbunny got a reaction from Ricardo in 2018 Clusterbusters Patient Conference Denver   
    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
     
  23. Like
    eileenbunny got a reaction from CHfather in 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.
  24. Like
    eileenbunny got a reaction from spiny in New Cluster Headache Research Study - Science 37   
    This study has been opened to everyone in the US, not just residents of NY and CA.
  25. Like
    eileenbunny got a reaction from LizzyC96 in 2017 Conference Room Share Thread   
    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
×