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Spreading the Word

Foxy Message
8 Jun 2011, 01:27 PM

The hardest part of dealing with pheo and para is finding people and information. I wanted to share with you a website that contains both in abundance. and their newsletter Please check it out, the newsletter is packed full of information and you can write in and ask any questions you'd like.
mariom Message
9 Jun 2011, 08:38 AM

Thank you for this. Whilst I don't think that there are many of us here, this is a rapidly changing part of medicine and any news is most welcome. Or children may one day benefit!
Foxy Message
9 Jun 2011, 01:50 PM

Facebook also has support groups one with 600 people and another nearing 300, and the pheo para troopers have a fan page. Some people like the anonymity of sites like this which facebook wouldn't allow, so the group with 300 people have a forum that gets 1000+ hits a day. All the sites have a ton of information and many pheo para patients. If any of you live in the Illinois area, or can travel. There's symposium on Oct. 6th, that you won't want to miss. 7 pheo patients will be presenting their stories (all very different from one another) and many more patients are reporting in on coming, so this is the chance of a life time to meet many pheo para patients in person. The symposium was held last year and over 100 people attended. As it was the first one, this year a lot of kinks will be ironed out, and we're expecting to see more people as well. (I presented last year and will again this year.) If you want more information on that please let me know and I will get the registration information to you. @mariom, I was 16 when first diagnosed...I'm all for sharing news that will benefit kids and adults alike. Hoping everyone is well!
Wendie Message
9 Jun 2011, 08:33 PM

I live in Illinois and would like more info about the conference. Thanks for the web site and information.
Foxy Message
10 Jun 2011, 01:02 AM

Coverage of the first year symposium can be found in the first issue of The Drop Zone newsletter, here's the link. It's on page 8 (It takes a little bit to load, sorry about that!) This year there will be added content and more presenters, along with many more pheo para patients within the audience. Here's some of the details and the website to register. If you want a digital copy of the brochure that is being sent out, please email me at, and I will send it to you in a PDF. I hope to see some of you there! I'm packing up the family and driving 10 hours to attend, it's an adventure! ^.^ Pheochromocytoma & Paraganglioma Symposium Thursday, October 6th, 2011 Lake Land College click "medical" 5001 Lake Land Blvd Mattoon, IL. 61938 Registration fee of $59.00 for community / dental hygenists and $20.00 for current Lake Land College students .. will include breakfast, class material, lunch, 0.5 credit hours of course credit or 7.5 CE’s for dental hygenist 7:30am to 4:30pm Community & Professional Programs Joanna - 217-234-5470 Dr. James A. Filipiak---- (If you have questions about the symposium, he would be best to email for an answer.) 217–234-2225 Admissions & Records 217-234-5434 Office of Student Accomodations 217-234-5259 (if special needs are requested) The Days Inn – Hotel 217-234-9600
mariom Message
31 Aug 2011, 11:02 AM

I just want to say that the Pheoparatroopers link has been an absolute godsend. They put me in touch with the NIH and my family have been screened - they have detected something that might otherwise have gone undiscovered until far too late.
Foxy Message
1 Sep 2011, 12:25 PM

Wonderful to hear from you! I'm so sorry that you and your family have to go through this, but glad to hear the you are getting the best care you can get. I've never been to the NIH, but I have heard only good from them. (I have many contacts within the NIH and the doctors there respond to emails faster than all the other hospitals that I communicate with.)
mariom Message
1 Sep 2011, 12:38 PM

Thanks Foxy. We are SDHB positive (I'm never sure how to say that, I guess we just have the SDHB mutation) and I've had a carotid mass a few years ago, so we're very conscious of the need for frequent screening. The NIH guys (Karen Adams and Dr Pacak's team) obviously have access to the newest tests and therapies but most of all they are really keen and they see lots of patients with this mutation. In the UK the screening recommendation at the moment is not as frequent which can make a huge difference. Thank you, NIH. It's early days but hopefully we can spread best practice around the world.
Foxy Message
1 Sep 2011, 12:54 PM

Yes frequent scans and testing is needed for SDHB. It has the potential to be an aggressive mutation, so it's better to be safe than sorry. The Troopers recently put out a newsletter that highlights SDHB. (If you haven't had a chance to look at it, you can find it here Take care and keep in touch!