9th Annual OUCH Convention Report

by Mike Day

The 9th Annual OUCH Convention was held July 11th through the 13th at the Embassy Suites Dallas – DFW South in Irving, Texas.

In attendance were more than 50 people from across the US, the UK and Europe. Svenn and Bente made it in from Norway, Tanya came in from Jersey (UK) and Helen escaped the Sheriff of Nottingham to attend our get together.

We were honored to welcome the new OUCH attorney, Mrs. Aurora Martinez Jones and her husband, Mitchell. Also among our guests this year, were representatives from our corporate sponsor, The Linde Group; Royce Fishman, Tony Eafrati, Kenth Drott and Greg Reppar.

The entries for the Poetry Contest were displayed at the entry to the hotel Atrium, allowing everyone in the hotel the opportunity to have a glimpse into our lives. I watched from a distance as people read the entries. Many walked away clearly affected by the powerful imagery in those poems.

On Friday morning, the folks at The Linde Group offered a tour of the LifeGas oxygen processing facility. Attendees came back with a new understanding of what all is involved in taking oxygen from the air and compressing it into those little sanity-saving tanks we treasure so.

Also during the Friday afternoon session, Tony Eafrati, LifeGas Homecare Market Manager, discussed several new products either currently offered or soon to be offered by LifeGas. Of particular interest was a product in development that would allow a user to fill numerous smaller tanks from one large oxygen tank, reducing the cost of delivery charges a patient might incur.

Friday's activities were closed with a buffet dinner.

Saturday morning was the Annual Members Meeting. Donna welcomed everyone to the convention and the officers presented an overview of the past year. The committee chairs reported on the status of their teams as follows: Patty Colon/Media Committee, Linda Howell/Family Services Team, Mike Day/Website/Newsletter The incoming directors and officers for the 2008 - 2009 year were introduced as follows: Mike Day/President, Helen Williams/Vice President, Jim Welch/Treasurer, Patrick Sanford/Secretary, Elizabeth Goodman/Director, Kathy Copelin/Director, Linda Howell/Director and Paul Logue/Director.

On Saturday afternoon, Professor Peter Goadsby delivered an overview of cluster headache, his position on imaging in the diagnosis of CH, the difficulties of getting treatments approved by the various regulatory bodies, studies on the effectiveness of various treatments and a possible new treatment using CGRP antagonists. CGRP antagonists could prove to be very helpful for cluster sufferers with increased cardiac and stroke risks as they do not appear to constrict blood vessels like the triptan-based medications.

Helen Williams, Linda Howell and Bill Mingus gave presentations about how CH had impacted their lives, including their road to diagnosis, their experiences with emergency rooms, CH medications, etc. Helen also described how ch had affected her youngest son, Jasper’s life. These presentations had a very strong impact on not only our members, but on our VIP’s as well.

In our final technical session, Greg Reppar, Director of Regulator Affairs for The Linde Group, addressed safe handling of oxygen equipment and the use of oxygen.

Saturday evening, following a wonderful banquet, the winner of the Poetry contest was announced. Eddie Langford’s poem “A Headache” received the most votes by convention goers and hotel visitors who took the time to read the various entries.

The following awards were given:

• The Bob Kipple Award for Service to the CH Community - Linda Howell

• Lifetime Membership - Jimi Hendrix & Jean French

• Supporter of the Year - Jackie Warrior & Carolyn Morris

• Dedication in Service – Donna Delacerda

• Volunteer of the Year – Patty Colon

• Pay it Forward Award - Paul Logue

• Committee of the year – Family Services Team

• Golden Regulator – Royce Fishman

• Comedic Relief - Elaine Holloman

• The Odd Couple Award - Paul and Helen

• Newcomer of the year – Rosa Murphy

We wrapped up the awards with a certificate of appreciation to Donna Delacerda signed by all the convention attendees.

Blake emceed the “Know Your Clusterhead” game, loosely based on the old television game show The Newlywed Game. Blake, Jean & Jackie, Helen & Paul and Donna & Patty had us all in stitches.

We concluded the night's festivities, as usual, by auctioning off items donated by our members from around the world. At one point Ruthie (ladyluv) revealed her inner auctioneer and had the joint jumping (and people rolling with laughter) with her high energy – high pressure sales tactics. A good time was had by all.