Please help support our group and events by making a contribution!
We thank you for your support!
(PayPal account NOT required! Follow the "Don't have PayPal account?" link at bottom left of screen after clicking "Donate" to use a CC)
Please make any checks payable to Britney Wharton.
HUGE thanks to Governor John Kitzhaber for declaring May 2013 Official Ehlers-Danlos Syndrome Awareness Month in the State of Oregon with a Proclamation!
Thanks to all who joined us for our Awareness Month Walk & Roll at Portland Waterfront Park - great turnout, great time!
Next Meeting: Support meeting June 22, 2013 - We will be meeting from 2-5 pm and focusing on support for all ages, kids and adults. If you are a Zebra Parent, please bring your kiddos to this meeting. We will be grouping by ages and offering a support "check in" style meeting. This space is handicap accessible and free to the group, thanks to Goodell Physical Therapy & Fitness Training. 4475 SW Scholl Ferry Rd., Suite 258, Portland, OR. Looking forward to seeing you there!
UPDATE May 8, 2013: We have a new Mini-Conference venue!! Thanks to all your generous early donations and additional enthusiastic response and some generous sponsors, we have been able to secure the Cascade Ballroom at the DoubleTree by Hilton Portland next to the Lloyd Center Mall at 1000 NE Multnomah St, Portland, OR 97232.
Unfortunately, we have isufficient funds to provide lunch for everyone sorry, and no outside catering is allowed. So we strongly encourage you to bring your own sack lunch, as the provisions on site are not equipped to handle us in 1 hour.
DoubleTree Room Reservations: 1-800-996-0510
Please RSVP to us at info@oreds.org so we can plan for seats and handouts. Public transit and driving directions here (pdf)
We are also now asking a $20 suggested donation per attendee to help us cover costs for this new venue (except food, bring your own, sorry), but no one will be turned away and any amount helps, thank you. (Use button above). Lunch is only an hour, and will be a rare chance to meet and mingle with zebras and doctors from all over the US.
And bring a little extra cash for some books and fund raising items that will be available also!
BIG thanks to:
ComForcare GPW
Shamrock Medical
Blanket Booster
Goodell Physical Therapy and Fitness and
American Medical Response Multnomah County, OR for your sponsorship and great Portland area zebra care!
And strong support from our talented friends at TDSWAPS.COM in Lebanon, OR - we couldn't do it without you!
PATIENTS: Please wear a medical ID alert bracelet or bring emergency info on your person THANK YOU!!
(Please also bring any creature comforts you may need to spend a day in a hotel conference room that we can't fully control).
SAVE THE DATE!
OR EDS Mini-conference (click for flyer) May 25th 2013 at DoubleTree by Hilton Portland 1000 NE Multnomah St, Portland, OR 97232 USA on EDS/HMS featuring several great speakers including Dr. Peter Byers from UW.
$20 suggested donation, but no one turned away!
DoubleTree by Hilton Portland is generously offering us complimentary on site parking for this event, vouchers provided at venue, though space is limited, and first come first served. On street parking is metered, carpooling and transit strongly encouraged. (Trimet MAX stop is 1 block away). Hotel guests enter main lobby doors to check in. All other drop-in guests use Banquet Entrance 50 yds further down.
Conference Agenda (click for pdf) open to ALL interested diagnosed or not, especially MDs, but please RSVP
10:00-10:30 a.m. - Intro and Welcome
10:30-11:15 a.m. - Heather Goodell PT "How Physical Therapy can assist the Hypermobile Patient"
Heather Goodell, PT has both personal and professional insight into EDS/HMS, has successfully treated several local Portland EDS patients, and has recently presented at the Oregon Physical Therapy Association's Spring Conference on this topic to her peers. She supports a holistic approach to management of EDS, including teaching patients to treat themselves. (Http://goodellpt.com)
11:15-12:00 p.m. - Allan Chino, Ph.D. ABPP. "From Sickness to Health: Activating our Mind-Body-Spirit Healing Mechanism"
Portland Medical psychologist, Dr. Allan Chino, provides services to patients with life-altering central nervous system-sensitive medical conditions, chronic pain, and histories of exposure to complex trauma. His focus is on the intricate interaction between our humanity and our biology, with the goal of positively influencing the latter by attending appropriately to the former. Dr. Chino is a Clinical Assistant Professor in the School of Medicine at OHSU and co-authored a book, "Validate Your Pain!". He is a past gubernatorial appointee to the Oregon Pain Management Commission, Past President fo the American Academy of Clinical Health Psychology, and Past Director of the Oregon Psychological Association.
12:00-1:00 p.m. LUNCH – Sorry, but due to insufficient funds, it is BYO Lunch, none provided 5/1/13
1:00-2:00 p.m. - Lisa Sterling "Intro to Mast Cell Activation Disorders"
Lisa Sterling is a recent board member of The Mastocytosis Society, and hosted the annual TMS Conference in Bellevue, WA in October 2012. She'll introduce MCAD to the EDS audience as many patients are finding this to be a relatively common comorbidity now. There will be a subsequent support meeting on Sunday May 26, 2013 in the same room as an adjunct to this at Easter Seals on Macadam.
2:00-3:00 p.m. - Peter Byers MD and Mitzi Murray MD - Keynote on EDS/HMS Today
Drs Byers and Murray are the clinical geneticists who also are directors of the Collagen Diagnostic Lab at UW in Seattle, WA. In addition to their roles as clinical geneticists in the Genetic Medicine Clinic at UW, they are part of the team that studies people and families with EDS and develops genetic tests. They will address EDS today and lead a lively discussion on this very heterogeneous and hard to diagnose condition.
3:00-3:30 Final Q & A and Wrap Up
We may plan a no host post conference dinner at a nearby restaurant to allow for more time to network and provide support during this rare opportunity for patients and doctors to meet from around the area. Details to come.
Please RSVP to info@oreds.org with a full nose count for your party and contact information, thank you!
And while no one will be turned away - we can REALLY use ANY donation you can make above- thanks so much!!
Also, we will have a free PNW regional MCAD (Masto/MCAS) Support Meeting the next day Sunday May 26, 2013 at Easter Seals Oregon 5757 SW Macadam Ave, Portland, OR 97239 11:30-12:30 sack lunch, 12:30-2:30 pm meeting with Lisa Sterling. (Scent free please!) No RSVP needed, but it would be nice to know if you think you might come: info@oreds.org.
HUGE thanks to Governor John Kitzhaber for declaring May 2013 Official Ehlers-Danlos Syndrome Awareness Month in the State of Oregon with a Proclamation!
Thanks to all who joined us for our Awareness Month Walk & Roll at Portland Waterfront Park - great turnout, great time!
Next Meeting: Support meeting June 22, 2013 - We will be meeting from 2-5 pm and focusing on support for all ages, kids and adults. If you are a Zebra Parent, please bring your kiddos to this meeting. We will be grouping by ages and offering a support "check in" style meeting. This space is handicap accessible and free to the group, thanks to Goodell Physical Therapy & Fitness Training. 4475 SW Scholl Ferry Rd., Suite 258, Portland, OR. Looking forward to seeing you there!
UPDATE May 8, 2013: We have a new Mini-Conference venue!! Thanks to all your generous early donations and additional enthusiastic response and some generous sponsors, we have been able to secure the Cascade Ballroom at the DoubleTree by Hilton Portland next to the Lloyd Center Mall at 1000 NE Multnomah St, Portland, OR 97232.
Unfortunately, we have isufficient funds to provide lunch for everyone sorry, and no outside catering is allowed. So we strongly encourage you to bring your own sack lunch, as the provisions on site are not equipped to handle us in 1 hour.
DoubleTree Room Reservations: 1-800-996-0510
Please RSVP to us at info@oreds.org so we can plan for seats and handouts. Public transit and driving directions here (pdf)
We are also now asking a $20 suggested donation per attendee to help us cover costs for this new venue (except food, bring your own, sorry), but no one will be turned away and any amount helps, thank you. (Use button above). Lunch is only an hour, and will be a rare chance to meet and mingle with zebras and doctors from all over the US.
And bring a little extra cash for some books and fund raising items that will be available also!
BIG thanks to:
ComForcare GPW
Shamrock Medical
Blanket Booster
Goodell Physical Therapy and Fitness and
American Medical Response Multnomah County, OR for your sponsorship and great Portland area zebra care!
And strong support from our talented friends at TDSWAPS.COM in Lebanon, OR - we couldn't do it without you!
PATIENTS: Please wear a medical ID alert bracelet or bring emergency info on your person THANK YOU!!
(Please also bring any creature comforts you may need to spend a day in a hotel conference room that we can't fully control).
SAVE THE DATE!
OR EDS Mini-conference (click for flyer) May 25th 2013 at DoubleTree by Hilton Portland 1000 NE Multnomah St, Portland, OR 97232 USA on EDS/HMS featuring several great speakers including Dr. Peter Byers from UW.
$20 suggested donation, but no one turned away!
DoubleTree by Hilton Portland is generously offering us complimentary on site parking for this event, vouchers provided at venue, though space is limited, and first come first served. On street parking is metered, carpooling and transit strongly encouraged. (Trimet MAX stop is 1 block away). Hotel guests enter main lobby doors to check in. All other drop-in guests use Banquet Entrance 50 yds further down.
Conference Agenda (click for pdf) open to ALL interested diagnosed or not, especially MDs, but please RSVP
10:00-10:30 a.m. - Intro and Welcome
10:30-11:15 a.m. - Heather Goodell PT "How Physical Therapy can assist the Hypermobile Patient"
Heather Goodell, PT has both personal and professional insight into EDS/HMS, has successfully treated several local Portland EDS patients, and has recently presented at the Oregon Physical Therapy Association's Spring Conference on this topic to her peers. She supports a holistic approach to management of EDS, including teaching patients to treat themselves. (Http://goodellpt.com)
11:15-12:00 p.m. - Allan Chino, Ph.D. ABPP. "From Sickness to Health: Activating our Mind-Body-Spirit Healing Mechanism"
Portland Medical psychologist, Dr. Allan Chino, provides services to patients with life-altering central nervous system-sensitive medical conditions, chronic pain, and histories of exposure to complex trauma. His focus is on the intricate interaction between our humanity and our biology, with the goal of positively influencing the latter by attending appropriately to the former. Dr. Chino is a Clinical Assistant Professor in the School of Medicine at OHSU and co-authored a book, "Validate Your Pain!". He is a past gubernatorial appointee to the Oregon Pain Management Commission, Past President fo the American Academy of Clinical Health Psychology, and Past Director of the Oregon Psychological Association.
12:00-1:00 p.m. LUNCH – Sorry, but due to insufficient funds, it is BYO Lunch, none provided 5/1/13
1:00-2:00 p.m. - Lisa Sterling "Intro to Mast Cell Activation Disorders"
Lisa Sterling is a recent board member of The Mastocytosis Society, and hosted the annual TMS Conference in Bellevue, WA in October 2012. She'll introduce MCAD to the EDS audience as many patients are finding this to be a relatively common comorbidity now. There will be a subsequent support meeting on Sunday May 26, 2013 in the same room as an adjunct to this at Easter Seals on Macadam.
2:00-3:00 p.m. - Peter Byers MD and Mitzi Murray MD - Keynote on EDS/HMS Today
Drs Byers and Murray are the clinical geneticists who also are directors of the Collagen Diagnostic Lab at UW in Seattle, WA. In addition to their roles as clinical geneticists in the Genetic Medicine Clinic at UW, they are part of the team that studies people and families with EDS and develops genetic tests. They will address EDS today and lead a lively discussion on this very heterogeneous and hard to diagnose condition.
3:00-3:30 Final Q & A and Wrap Up
We may plan a no host post conference dinner at a nearby restaurant to allow for more time to network and provide support during this rare opportunity for patients and doctors to meet from around the area. Details to come.
Please RSVP to info@oreds.org with a full nose count for your party and contact information, thank you!
And while no one will be turned away - we can REALLY use ANY donation you can make above- thanks so much!!
Also, we will have a free PNW regional MCAD (Masto/MCAS) Support Meeting the next day Sunday May 26, 2013 at Easter Seals Oregon 5757 SW Macadam Ave, Portland, OR 97239 11:30-12:30 sack lunch, 12:30-2:30 pm meeting with Lisa Sterling. (Scent free please!) No RSVP needed, but it would be nice to know if you think you might come: info@oreds.org.
About Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome is a group of genetic collagen defects that affect a very wide array of body systems in a surprisingly wide variety of seemingly unrelated ways, including everything from painful "loose" joints to the GI tract, vascular system, teeth, feet, eyes, mood, insomnia, migraines and sensory processing to name a few. This lends to the challenge of diagnosing the condition as patients end up seeing an equally wide array of doctors and specialists in their sometimes decades long journeys to being diagnosed. Symptoms can vary equally widely in severity and nature of onset, adding to this challenge for both patients and doctors. Some experience just one or two problem joints going out easily or repeatedly at first. Others start experiencing fibromyalgia and widespread joint and muscle pain, weakness and fatigue initially. Many experience migraines and lots of food and drug allergies or sensitivies. Depression and anxiety are quite common and may be organic in origin, as well as secondary. It often comes as a great relief to know there may be just one underlying condition responsible for so many issues in a person's life. We like to say Ehlers-Danlos Syndrome isn't rare, it's just rarely diagnosed. Learn more at the link above. Many find this handout from Dr. Alan Pocinki at the EDNF 2010 conference to help inform their doctors quickly:
http://www.dynakids.org/Documents/hypermobility.pdf
About the Oregon EDS Support Group
We are a small but steadily growing group of patients with Ehlers-Danlos Syndrome and their families and friends in the greater Oregon area in the US Pacific Northwest seeking to support one another in our journeys with this challenging condition. We meet quarterly (January, April, July, October) at various places, some public, some private as people and resources allow. Meetings are usually educational in nature, but sometimes we just meet to have fun and support one another as able. We are seeking to form a 501c-3 once we have enough active interest and funding. Anyone interested in helping us further that goal is welcome to join us in the effort. As well as anyone newly diagnosed or "wondering" (an all too common experience).
Please contact info@oreds.org for more information.
To learn more about Ehlers-Danlos Syndrome, please see:
http://ednf.org
http://cedsa.org
http://prettyill.com
http://medicalzebras.com
http://hypermobility.org (UK)
http://ehlers-danlos.org (UK)
http://ehlersdanlosnetwork.org
http://murraywoodfoundation.org
http://www.reumatologia-dr-bravo.cl (CL)
Relevant Books:
Disclaimer
The information in this web site is provided as a free public service. The information contained is for educational and informational purposes only, and is not intended to replace professional advice, whether medical or otherwise. Consult your own qualified physician or other health care professional regarding your individual needs.
Ehlers-Danlos Syndrome is a group of genetic collagen defects that affect a very wide array of body systems in a surprisingly wide variety of seemingly unrelated ways, including everything from painful "loose" joints to the GI tract, vascular system, teeth, feet, eyes, mood, insomnia, migraines and sensory processing to name a few. This lends to the challenge of diagnosing the condition as patients end up seeing an equally wide array of doctors and specialists in their sometimes decades long journeys to being diagnosed. Symptoms can vary equally widely in severity and nature of onset, adding to this challenge for both patients and doctors. Some experience just one or two problem joints going out easily or repeatedly at first. Others start experiencing fibromyalgia and widespread joint and muscle pain, weakness and fatigue initially. Many experience migraines and lots of food and drug allergies or sensitivies. Depression and anxiety are quite common and may be organic in origin, as well as secondary. It often comes as a great relief to know there may be just one underlying condition responsible for so many issues in a person's life. We like to say Ehlers-Danlos Syndrome isn't rare, it's just rarely diagnosed. Learn more at the link above. Many find this handout from Dr. Alan Pocinki at the EDNF 2010 conference to help inform their doctors quickly:
http://www.dynakids.org/Documents/hypermobility.pdf
About the Oregon EDS Support Group
We are a small but steadily growing group of patients with Ehlers-Danlos Syndrome and their families and friends in the greater Oregon area in the US Pacific Northwest seeking to support one another in our journeys with this challenging condition. We meet quarterly (January, April, July, October) at various places, some public, some private as people and resources allow. Meetings are usually educational in nature, but sometimes we just meet to have fun and support one another as able. We are seeking to form a 501c-3 once we have enough active interest and funding. Anyone interested in helping us further that goal is welcome to join us in the effort. As well as anyone newly diagnosed or "wondering" (an all too common experience).
Please contact info@oreds.org for more information.
To learn more about Ehlers-Danlos Syndrome, please see:
http://ednf.org
http://cedsa.org
http://prettyill.com
http://medicalzebras.com
http://hypermobility.org (UK)
http://ehlers-danlos.org (UK)
http://ehlersdanlosnetwork.org
http://murraywoodfoundation.org
http://www.reumatologia-dr-bravo.cl (CL)
Relevant Books:
- Joint Hypermobility Handbook- A Guide... – Dr. Brad Tinkle, 2010 (2nd edition, blue cover)
- Hypermobility, Fibromyalgia and Chronic Pain, 1e – Hakim, Keer and Grahame, 2010 (for MDs)
- A Guide to Living With Hypermobility Syndrome: Bending without Breaking –Isobel Knight w A. Hakim, 2010
- A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome - Isobel Knight NEW 2013
- Hypermobility Syndrome: Diagnosis and Management for Physiotherapists, 1e – Keer & Grahame, 2003
Disclaimer
The information in this web site is provided as a free public service. The information contained is for educational and informational purposes only, and is not intended to replace professional advice, whether medical or otherwise. Consult your own qualified physician or other health care professional regarding your individual needs.