AGSD (US) Annual Conference - Denver, Colorado, USA 11/12 September 2009

The main web site for the AGSD US conference is here

 


Programme highlights for those with McArdle's

The following sessions of the main programme on Saturday 12th are the ones which are likely to be of most interest to those with McArdle's.

9:00am to 9:45am – GSD Gene Therapy and Animal Models, Dwight Koeberl
10:00am to 10:45 am – Pharmacological and Nutritional Treatment for McArdle disease, Ros Quinlivan
10:45am to 11:30am – Fuels for Exercise in GSD, John Vissing
1:30pm to 2:30pm – Muscle GSDs: Ask the Experts, Ron Haller, Ros Quinlivan, John Vissing
2:45pm to 3:45pm – Physical Therapy for the GSDs, Laura Case
3:45pm to 4:15pm – Question and Answer Physician’s Panel

 


Additional meetings

Watch out for a McArdle's information table in the registration area. Type Vs will get together as a group as follows, in addition of the main programme:

Friday 11th - 3 pm to 5 pm During the registration period and before the dinner starts at 5.30. We will have use of a meeting room.

Saturday 12th - 8 pm to 10 pm This is after the dinner. It is late and we will be tired but this will be more of a social get together. We will gather in one of the hotel's public areas.

Sunday 13th - 9 am to 11 am A last chance to catch up with each other for anyone not yet needing to leave for their journey home. Again meet in one of the hotel's public areas.

 


People with McArdle's who will be attending the conference

There will be about 12 of us, plus partners etc. To have your details added please email them to Andrew Wakelin, andrewwakelin(at)btinternet.com.


 

Stacey Reason, age 39

Toronto, Canada
I was diagnosed with McArdles in 2007 after a hospitalization of rhabdomyolosis. I was ecstatic to learn of this diagnosis, as I have been symptomatic my entire life. Even though I did not know 'why' I couldn't function at the level of my peers, I knew something was wrong. That being said, I have led a very active life - I have enjoyed running, rowing, hockey, hiking, swimming and cycling. Of course my motto has always been...'slow and steady wins the race'.

Arriving: Thursday
Departing: Monday





 


 

Andrew Wakelin, age 60 (and slowly getting used to the idea)

Builth Wells, Wales, UK
I had symptoms from age 4, bad time at school but did a newspaper delivery round which I reckon set me up for life - 90 minutes a day of exercise at my own pace. I once thought my symptoms were progressing but it was age and weight - could do something about the latter. Eventually diagnosed age 30 when my gout was being investigated. No help for 20 years, then found the UK McArdle's clinic in 1999 which has been a real boon. I am a keen hill walker and have climbed all the 188 mountains in Wales over 2,000 feet as well as some others around the world including 19,340 feet Kilimanjaro (actually failed 200 feet from the top but due to altitude sickness not McArdle's!). Can do all that but get a 'clawed' hand from pruning a bush in the garden! I am the McArdle's rep to the AGSD (UK) and co-ordinate our 130 or so patients.

Arriving: Thursday approx. 4pm
Departing: Sunday late morning


 

Dennis Levenson, age 37

San Francisco Bay Area
I've had symptoms ever since I can remember. I was told numerous times that I was just lazy or they're "just growing pains" and "you'll get over it". I was about 15 when people (parents and relatives) took me seriously when I had rhabdomyolysis (CPK 200,000) and renal failure. Doctors thought I was on drugs because nothing else causes such muscle injury except blunt force, or so they thought.... I ended up hospitalized several times until I had a muscle biopsy at around 17. I was diagnosed with GSD and they narrowed it down to Type V. What caused my hospitalizations was likely related to me running on the track team in high school, pushing myself way too far. I am careful to eat well and not overdo it most of the time. But, I'm a tad stubborn so when I get started on a project I keep going until I can't move anymore. 99% of the time I regret that. With that said... I enjoy being a family man, wood working, bowling, home remodeling (whoops me every time), playing poker and overall being a big goofball.
(Dennis, that's a good way to cope with your McArdle's - ride a horse! - Andrew)

Arriving: Friday around 3pm
Departing: Sunday morning


 

Margaret Mahoney (Peggy)

Delaware
I have lived in the eastern part of the US all my life; Pennsylvania, North Carolina and now Delaware. On September 7th I will celebrate my 45th anniversary as a Sister of Mercy.

Arriving: Thursday 12.30
Departing: Sunday morning


 

Mike Morgan, 18

Orange County, California
My name is Mike Morgan, I am 18 years old and I am from Orange County, California. I was diagnosed at 14 years old with possibly having the worse case of McArdle's Disease known. I LOVE music. I play the guitar, drums, bass, and piano.
Looking forward to meeting all of you.





Arriving: Thursday
Departing: Sunday


 

Leslie Pullen, 37

Denver, Colorado
My story is a typical McArdle's story. I was officially diagnosed at age 30. One of my brothers also has McArdle's. I have spent the last year recovering from ankle surgery, not related to McArdle's, but certainly made all of my McArdle's symptoms worse when I became sedentary. I am fortunate the injury is mostly healed and I can get back to walking. I live in the mountains of Colorado with my partner Terri of 8 years and our two Jack Russell terriers. I am originally from North East Tennessee. I have seen both Doctor Slonim and most recently Dr. Haller.
In the picture Terri on the left, me on the right.

Arriving: Saturday 8 am
Departing: Saturday after dinner


 

Gaspar Gomez, Jr

Oak Lawn, Illinois
I will be attending the conference this weekend as well as my sister who also has McArdle's. Can't wait to finally meet some of you.

Arriving:
Departing: