WELCOME TO THE PARC

Thought for the day:

 Strength does not come from what you can do.

It comes from overcoming what you once thought

you couldn't."

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TO  PARC  MEMBERS,  SUPPORTERS  AND  VISITORS:

WELCOME!

We do our best to keep this page updated.

(last updated May 29, 2023.)

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HOW TO REACH US:

Please use our CONTACT US page.

Thank you.

We welcome all donations.

Please use the WAYS TO HELP page or yellow donate button.

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*****PARC NEWSLETTER for March 2023 is postponed until the end of May. 

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RESEARCH:

FIRST CANADIAN RESEARCH in  July 2022. Please read.

Don't miss it!!!

SECOND RESEARCH:

Below,local research at McMaster University.

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PARC NEWSLETTER 2023 will resume in May.

We are switching to a digital newsletter. Contact us if you wish your name and email added to the list.\

Membership fees apply.

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2022

Vaccination Certificate:

To receive your proof of vaccination certificate, please go to: 

https://covid-19.ontario.ca/proof-covid-19-vaccination#how-to-prove-your-identity

No computer??? Please call 1 833 943 3900.

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September 9, 2021

ANOTHER NEW BOOK ON CRPS!

Dear Fellow RSD/CRPS Patients,

Hello, I would like to inform you that Dr. Alaa Abd-Elsayed and Eric Phillips are writing their fifth book regarding CRPS patient stories.

They would like to hear from anyone who would be interested in having their personal CRPS story published in our new book.

By having your CRPS story published it would help other CRPS patients cope with their pain, help educate the medical community,

help educate patients, family members, and friends.

If you are interested submitting your story and would like more information about the book, please contact:

Eric Phillips at: utopia33@prodigy.net or by phone at: 508-479-9888. Thank you.

P.S. Eric is a long time, good friend of PARC and is now publishing books on CRPS. It is good for Eric and patients to get the word out!

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WALK TO CONQUER CRPS 2021 : THORNHILL RACE TO CONQUER CRPS

August 27, 2021 Dr. Shulman and Natalia's Bike race. 

Thanks to Dr. Shulman and Nataila for taking part on Friday!  WHO won? It was a draw!

IF YOU HAVE PHOTOS OF THE WALK, PLEASE EMAIL TO parc21026@yahoo.ca. We can post them.

As of April 25 2020, we have not received any. C'mon people!!! Don't complain, give us your photos and share!!

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WALK August 28, 2021  , give us your photos. WALK at Lock 3 Museum

WALK UPDATE: Helen walked 4.16 km for 57 minutes and 5484 steps. Thanks to Jeff who was able to measure the distances on his gadget.

Thanks to Jeff, Lisa and Cassandra who also walked.

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        VERY IMPORTANT NOTICE:   

        We realize that our members understand this but for those who have found us for the first time, it bears repeating:

       All funds donated to PARC will remain in Canada and benefit only Canadians.

Funds are directed to CRPS awareness, education and *research.

No one at PARC receives a salary.

*All funds from the Walk will go to Canadian Research. Please see out Canadian Research and Conference page for new research!!

Thanks to all who donated and supported us!

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*CRPS AND CORONA VIRUS: NOTICE FROM DR. SHULMAN

Those of you with CRPS already have a weakened immune system and therefore run a higher risk of getting COVID-19.

Here are the other risks:

1. being over 60 years of age,

2. having one of these illnesses:

3. heart disease, diabetes, lung disease, active cancer, or dialysis.

*Reference: Clark J MD et al Molecular Pain 2018 Auto inflammatory and auto-immune contributions to CRPS

Molecular Pain 2018 

APRIL 16, 2021.  A VACCINATION FOR HELEN

As you know the Ontario vaccinations are upon us.On Friday afternoon, Helen (Executive Director) was able to access a local pharmacy and get an appointment the same day. She went at 3 PM and received a vaccination by the pharmacist ,Waleed, who was very polite and gentle with a needle. On Saturday, she felt tired and somewhat sore. Sunday she felt fine. The pharmacy was very organized and the pharmacist listened patiently to facts about CRPS. The staff was given some education, flyers and the website.

Thanks to HealthMax Pharmacy 366-1 Bunting Road. We appreciate you! https://www.healthmaxpharmacy.ca/#

Helen received her second vaccinaton on July 15. Other than feeling tired, no side effects were reported.

(NOTICE : only applies to ONTARIO residents.)

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DONATE TO PARC WITHOUT GETTING HIT BY PAYPAL FEES!!!

Make your donation mean more by using this link. OK here is the way to donate to Paypal without you or PARC getting hit with Paypal fees!

Please use this form if you prefer!

Click here!

OR cut and paste This link into your browser:  https://www.paypal.com/fundraiser/charity/3459807

Thank you!! 

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PARC PEARL

Our newsletter will switch to a digial version in May 2023.

Membership fees apply.

Alternatively you can support PARC with a donation. 

Our funds from the newsletter go to helping CRPS patients.  Proceeds go to our PARC's Programs for patients. 

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PAST ISSUES

past MARCH issue 2021

Here are the topics:

• Questions about CRPS?*
• What do you say when someone with CRPS has a bad day?
• Explain Pain by Lorimer Moseley and David Butler
• Qualities of a Successful Warrior
• Take Control, Take Charge
• "This is Going to Change your Life Forever": Lisa Ketlo
• When you get CRPS
• Things to Avoid when you have CRPS
• Questions for the Soul
• Research Roundup

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November 30, 2020.

PAST ISSUES Here are the topics:

• Budapest Criteria for your doctor(s) Copy and distribute to your medical team.
• Review of "Pathways Pain App" by Rachel Caplan 
• "CRPS Does not Define Me" by Emily Summerhayes
• "What I have Learned", and "Resources for CRPS", by Fern Kwantes
• "Holistic Nutritionist" for CRPS by Helen Small
•  Book Review: "Pain Tracking" by Deborah Barrett PhD and reviewed by Helen Small
• "Research Roundup" by Helen Small 
• "Ways to Take Charge of your Prescription Medication" by Chris Harper B. Pharm.
• Deadline for Contributions is Dec. 31, 2020.We issue tax receipts.

Our funds from the newsletter go to helping CRPS patients.  Proceeds go to our PARC's Programs for patients. 

Thank you for supporting PARC with a donation. We appreciate it.

DID YOU KNOW? PARC receives no government grants. We rely on donations and the generosity of our supporters.

We are a registered charity in Canada (since 2002) and we are able to issue tax receipts for donations of $20 and over.

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December 4, 2020.  WHAT IS A BEMER?

If anyone has more information on a Bemer, please email it to us at the office: E-mail Us

Bemer Group (Click here or copy and paste link below into your browser.)

https://life.bemergroup.com/science

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November 27, 2020.

Lee Valley has a rechargeable hand warmer for $25 each or $20 for two or more.The unit slips into a glove or pocket and it consists of lithium ion cell battery. It heats up quickly and a cable is supplied for recharging.

It is on the back page of the Holiday Gift Catalogue or www.leevalley.com. or 1 800 267 8767.

It makes an awesome gift for someone with CRPS!

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October 1, 2020.  MASKS BY DONATION

I have done some research to find the best fitting masks that are both breathable and also have an extra filter cloth inside that protects the wearer as well as the person nearby. I have had great reviews on comfort and looks.  I have full body CRPS and have only found one treatment to be successful: ketamine infusions. I have spent the last decade trying to get the infusions here in Canada with no luck so I am hoping to raise approx $10,000 to cover the medical portion ($5500 US) plus lodging and food while there. 

I use a serger on the seams so they are long wearing through many washings.The middle layer helps absorb the moisture from the breath and an additon of an aluminum nose piece keeps glasses from fogging up when wearing the masks.  I give several options for wearing these comfortably from ear loops with sliders to tighten as needed to using laces and toggles or back of head elastic or Velcro. 

In order to make a mask I need some measurements which are averaged to the closest quarter of an inch. 

1. Bridge of nose to front of ear

2. Bridge of nose to just under the chin. 

3. If wanting elastic around the back of the head, please measure from the front of the ear to the front of the other ear around the back of the head. 

4. Please give me an idea of what look you would like: What are your favourite colours? patterns? flowers or animals or any other suggestions? 

I have made these masks for children as well as adults and they have all received rave reviews. 

To reach Fern about specifics of your mask, go to:  f.kwantes@gmail.com

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TORONTO CRPS CONFERENCE October 26, 2019. (Slides Available.)

Special thanks to Jean Pamenter, PARC Director, who sponsored lunch and other conference costs.

OCTOBER CRPS Conference slides (Power Point) available from Dr. T.  Packham and Dr. D.L. Shulman. Search the DOWNLOADS page.

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August 5, 2020.

Rachel has been interviewed by Melissa about her life as a CRPS patient. Thanks to Rachel for bringing awareness to CRPS.

https://www.stitcher.com/podcast/craps-a-day-in-a-life-with-a-woman-with-crps#/register

Thanks to Rachel Caplan. Rachel is now revewing a pain app for PARC. Her review will appear in the Winter issue of PARC PEARL 2020.

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April 22, 2020.  What is a DRG (Dorsal Root Ganglion)Stimulator?

DRG is a smaller, newer version of the old spinal cord stimulator, which emits a mild electrical pulse to change pain signals as they travel up the spinal cord to the brain. Danger signals come from the body. They travel from the periphery (arms or legs) into the "relay station" (DRG) in the spine. From there, signals travel up the spinal cord to the brain. 

A DRG stimulator is suitable for lower extremity CRPS  ONLY. The machine targets a specific area e.g. the pelvis, groin, hip, knee, ankle, or foot. A trial version can be implanted in the body for 5-7 days to see how much it reduces pain. It is proven safe and effective. 

For more information please see:  AboutYourPain.com

(NOTE: video #2 may not be suitable for young children, adults please watch first)

https://www.youtube.com/watch?v=p9daLM-_hLo (general)

https://www.youtube.com/watch?v=kkcK74jqpKM   (needle placement of DRG leads)

https://www.youtube.com/watch?v=UjpWUoOYD98 (Overview)

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PLEASE NOTE: WE ARE A NON-PROFIT ORGANIZATION (and not just a support group)

Established in 2002 by two CRPS patients, PARC is a non-profit charity (receiving non-profit status in 2002) which helps those diagnosed with CRPS.

We are a charity whose mission is to advise, support, encourage and improve the lives of patients with CRPS.  We also promote awareness of CRPS through

disseminating information and we take part in and/or sponsor CRPS research. In 2022, we are taking part in research.

We are a large Canadian Network of patients with people in every province and territory.

Would you like to join? 

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February 24, 2020. Explain Pain by Assoc. Prof. David Butler and Prof. G. Lorimer Moseley PhD. Noigroup Publication (2013)133 pages, 90+ illustrations and diagrams. ISBN: 978-0-97342-6-9 To purchase: Explain Pain (Noigroup) and available on Amazon.ca.

This book aims to give people in pain the power to challenge pain and to consider new models for viewing what happens to your body and brain during pain.Why can pain persist after tissues have had plenty of time to heal? Illustrations help people understand how the brain plays a role in pain.

Butler says," it is no longer acceptable that pain be just managed; we must expect that it can be treated, and sufferers can alter it themselves through education."

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January 24, 2020. NEW CRPS BOOK!

  CRPS: Patients' Perspective of Living in Chronic Pain: This is a book by our friend Eric Phillips in USA.

   Amazon Review: "Complex Regional Pain Syndrome (CRPS) affects millions of people worldwide. The disease causes patients to suffer from constant chronic pain after minor trauma or surgery. The purpose of this book is to share the stories of how CRPS impacts the lives of patients. We hope that these stories will enlighten how CRPS disrupts the patient's life on many levels, from having family issues, social issues, financial distress, and how the medical community treats these patients. It is our hope this book will help educate the public, the medical community, and promote more awareness about CRPS."

PARC's Review: Having read the book, we know the patient stories are quite accurate.They depict the suffering that goes on due to disbelief and enormous ignorance about the intensity of CRPS pain. CRPS pain is rated 42 out of 50 on the McGill Pain Index. These patients are truthful; they try desperately to communicate their pain and suffering in hopes that they get the help they need. Patients have waited years for a diagnosis because a doctor has not heard of it.

  **Volume 2 of this book is out on Amazon at the link below.

      Have you read the book? Amazon link

For other CRPS books, please see this link: CRPS/RSD books

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February 17, 2020 LIVING WITH CRPS: To find out what it is like to live with CRPS daily, here is a blog  by Kristen, a lady with CRPS in Nova Scotia. Despite her pain and disability, she forges on and helps others with CRPS.https://hippierays.wordpress.com/blog/

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January 6, 2020.

TO ALL PATIENTS WITH CRPS IN CANADA:

1. Lorimer Moseley PhD (University of South Australia) is well known for studying CRPS. He and his task force have a CRPS survey which will help researchers see what problems CRPS patients face. This group needs  to collect as much data as possible through a Delphi questionnaire.  Can you help?

PATIENTS ARE INCLUDED IF:

•  you are over 18 years old
•  you have symptoms for 4 months and over

PATIENTS ARE NOT INCLUDED: 

• If you are under 18 years old, you may not participate.
• If you have CRPS for less than 4 months, you may not take part. 

Just follow the link below and complete the survey. It will take about 15 minutes. (Please click on the link below.)

PATIENT CRPS SURVEY

If survey is closed, check back later.

2. If you are a doctor (or other health care professional ) with CRPS patients, please email us for the Professional survey.

Thank you. EMail Us!

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  Apple App Store:  https://itunes.apple.com/us/app/nanolume-pain-tracker-diary/id919172608?ls=1&mt=8
 
  Google Play Store:   https://play.google.com/store/apps/details?id=com.nanolume.nanolumeapp

NANOLUME:  Invented by a pain doctor, Nanolume is a useful device for keeping track of your pain. 

PAIN IS LIFE-CHANGING. HELP IS HERE. The interactive pain-tracking diary by Nanolume® helps you remember exactly what you feel every day. By keeping a record of the textures, intensities and locations of what you feel everyday, you and your doctor can better understand what you are suffering with and how your pain responds to treatment.

This app uses a smartphone or iPad. 

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PERSONAL FUNDRAISING PAGES FOR MEMBERS OR NON-MEMBERS

PARC has teamed up with Canada Helps (www.canadahelps.org) to offer personal fundraising pages where you tell your story, add some photos or videos and designate PARC as the charity which receives the funds for research. Here is an example:

BEAT CRPS! Andy's page. 

If you would like to do your own fundraising page please call us or go to: Canada Helps. TEL: 1 877 755 1595. There is no cost involved. Please let us know.

We can post a link to your page here.

We thank you for supporting PARC!

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ORANGE CRPS AWARENESS BRACELETS 

Bracelets are available from PARC. The cost is $2 each. Proceeds go to PARC PROGRAMS for 2022-3.

PARC BONUS OFFER:

We have extended our FREE orange bracelet offer: with the purchase of a new PARC Deluxe Membership

from January 16 to  Dec. 31, 2023. 

TO PURCHASE: 

Order some for your friends and family! Major credit cards will be accepted through Paypal.

GIBLE?A

CRPS Awareness Bracelet Quantity

1 Bracelet $2.00 CAD5 Bracelets $8.00 CAD10 Bracelets $16.00 CAD

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PAY IT FORWARD PROGRAM

If you have received a package, received a HELP LINE call, or a newsletter,

someone has donated to help you. 

If you want to be part of this program you can help!

You are welcome to donate! Tax receipts are issued for donations of $20 and over.

To donate to PARC, please click button below.

DVD 2013*

PARC PEARL 2020

POCKET CARD

SUPPORT GROUP NIAGARA

2020 EVENT

WISH LIST

UPDATES 2022-23

If anyone has a CRPS story in the media, please forward it to PARC for posting. Thank you!

DRG Stimulator Implanted: November 26,2019.

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Canada's Second Opioid Crisis

Opioid Crisis

https://www.ctvnews.ca/health/the-other-opioid-crisis-doctors-weaning-patients-off-much-needed-painkillers-1.3837163

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2018 Stories

Congratulations to Dr. Jeff Ennis, a caring, compassionate doctor

who wrote an excellent opinion article in the Toronto Star:

February 6, 2018.

Toronto Star

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Thank you to all the courageous patients who promoted awareness of CRPS.

You are all awesome!

October 19, 2017. Fern (CRPS Survivor) and Bella have been featured on a

 Collar of Duty episode on Animal Planet. Here is the link:

www.animalplanet.ca

Search for Collar of Duty Episode 6.

June 17, 2017: 16 year old Lauren Seabrook's struggle:

http://www.cbc.ca/news/canada/north/yellowknife-teen-lauren-seabrook-1.4165439

June 1, 2017. Alicia Ellis is telling her story about CRPS through Alberta Health Services..

https://www.youtube.com/playlist?list=PLi1tOF1I5ZoWY3hfrrwu15NTWz8e9amO

May 21: Read about CRPS and the devastating effect it has on Rachel Caplan. 

Global News May 21,2017 by Emanuela Campanella

Then read her "LIVING IN THE LIGHT "2020 story in our November 2019 issue! 

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May 17, 2017: The FIGHT Project by Lauren Seabrook, a teen with CRPS:

https://youtu.be/xd6AlLmwK10

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Please watch Krista Spence's encouraging video first played at PARC's Nov. 12/16 event:

https://www.youtube.com/watch?v=-12lCBT-EQY

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April 18, 2017: Rachel Caplan Toronto Star:

Toronto Star April 18, 2017

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Please view Yolande Clement's successful battle with CRPS at: 

CRPS: A Success Story

Yolande is also a PARC coach.

WHAT IS RESTORATIVE YOGA?  

It calms the mind and body. It is easy poses on the floor and deep breathing.

1. Try Jillian Pransky's Restorative Poses on You Tube. www.youtube.com

2. Rodney Yee's DVD: COMPLETE YOGA for Beginners.  

Out of the 4 practices, the last one is Restorative Yoga which is very effective.

For more please visit: Gaiam

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LDN: LOW DOSE NALTREXONE

Low dose naltrexone has been studied for CRPS and offers hope.

LDN lowers the inflammation levels in CRPS. (Please note that high dose naltrexone is for treating alcoholics.)

Low dose naltrexone lowers inflammation.

Weinstock, L.MD and Chopra P. MD: Identification and Treatment of New

Inflammatory Triggers for CRPS International Anesthesia Research Society 2015.

(Ask us for a copy.)

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INTENSE PAIN SOON AFTER WRIST FRACTURE

STRONGLY PREDICTS WHO WILL DEVELOP CRPS

http://www.jhandtherapy.org/article/S0894-1130(16)30196-X/fulltext

Recent research has found that

1 in 26 with a wrist fracture

can develop into CRPS.

The "red flag is pain greater than 5 out of 10".

Also if the patient has pain more than (or equal to) 5/10

for 3 days after surgery, suspect CRPS.

Early diagnosis is crucial.

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DVD: LIVING A LIFE IN PAIN:

THE STORY OF RSD/CRPS

by Sarah Panas

The film features four CRPS patients, a CRPS doctor,

a psychologist and PARC's Executive Director.

You Tube Trailer:

Living a Life in Pain

Cost is $10 plus shipping = $13.50 in Canada

Please ask us about US and International rates.

EMail Us!

Major credit cards will be accepted through Paypal.

CHRONIC PAIN SUPPORT GROUP OF NIAGARA(CPSN)   _____ For further information: please contact PARC: E-Mail Us!     ORIGINAL STAINED GLASS ART CARDS! WATER (Design 2 of 8)   OR DESIGN Glassworks has utilized breathtaking colors and brilliant textures of stained glass for the luminous glass art that they create. These radiant cards are awesome photos of the art glass that Pam and Oded Ravek have so lovingly created. This set of 8 original cards are blank and suitable for any occasion.   MORE STAINED GLASS ART CARDS     (Design 3 of 8)   OPTION 1: To download an order form, click here: DVD/CARD FORM   OPTION 2: We are accepting online payment. It is a secure site. Major credit cards are accepted.

 

Why subscribe to our newsletter?

"PAYING IT FORWARD" Program

Your contribution is used to help others with CRPS who have lost their way. According to our HELP LINE calls, many do not know where to turn, others are not diagnosed early enough nor do they receive the proper treatment.  It is devastating to a pain patient when the doctor does not believe them. Others are in so much pain they cannot function well. You can help us to help them!

DOING YOUR OWN RESEARCH vs OUR NEWSLETTER

The Internet may give you the research on CRPS but it is confusing and hard to interpret. It is a puzzle. How does this paper fit into the current research on CRPS?

When reading a research paper, please ask yourself these questions:

1. Who authored it and what is their reputation?

2. Is the paper's hypothesis valid? Did they prove the hypothesis?

3. Does it measure what it says it measures?

4. Is the conclusion valid? Are there any flaws in the data?

5. In the long run, is this paper important? What does it contribute to the general knowledge of CRPS?

6. Will this drug or treatment be available? Where? When? Neridronate is now in clinical trials but was cancelled June 21.  US trials were also unsuccessful.

CRPS is very complicated and hard to research unless the authors completely understand the many elements involved in CRPS.

Who is doing what element of CRPS research? There are many lines of research to pursue i.e. inflammation, blood flow, nerve damage and brain issues. The hot new research lines are the immune system factors and brain issues.

Our newsletter draws the big picture for you and brings together all the elements of CRPS research and important conclusions. We are very well connected with several excellent researchers.

Besides, your support is very much appreciated!

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MEMBERSHIP

OPTION 1: Deluxe membership ($35 per year) includes PARC PEARL, 3 issues per year, PARC Alert, Ongoing Support, CRPS Self Management Program(CRPS SMP) and new PARC FORUM. For this low price you receive a lot of services and access to our private member number.

Ongoing support is crucial to coping and managing CRPS. We are the only CRPS charity which provides this valuable service (CRPS/SMP).

Your funds are also helping another CRPS patient get the help he/she needs and benefit from our excellent services as well.

The  PARC Forum: "PARC PLACE", is at no extra cost. It is a way of thanking our members and supporters for their onging help.

PARC PLACE is a new online forum available to deluxe members. You must be a deluxe member to take part in the forum.

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OPTION 2: Newsletter only: ($25 per year). The newsletter is published 3 times per year. (There are no services with this option.)

OPTION 1 and 2 are tax deductible and a tax receipt will be issued.

You will receive a free CRPS awareness bracelet with the purchase of a NEW deluxe membership.

This card is the size of a credit card easily stored in a purse, wallet or pocket.

DO YOU HAVE BURNING PAIN?

HAS IT LASTED LONGER THAN THE EXPECTED HEALING TIME?

WHEN TO SUSPECT CRPS...

INSIDE TEXT:

Signs and symptoms of CRPS.

PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?

This sleek 4"x 3 3/8"pocket card has concise CRPS information called the Budapest Criteria which is the way to diagnose CRPS.

PATIENTS: Are you tired of explaining what RSD/CRPS is? Do your family and friends understand? Does your doctor know about it? Does the ER staff, specialist, local hospital, nurse, or physiotherapist know? Probably not.

Now there is no need to explain--let the Pocket Card do it for you. Why not keep one in your wallet? Cost is $1.00 each.

 Q: HOW CAN I GET A FREE CARD?

A: Sign up as a new member with PARC. Please send your mailing address and membership fee ($35 CDN ) deluxe membership or $25 CDN (for newsletter only ) to the address below. (US and International rates available on request.)

Q: WHAT IF I ONLY WANT CARDS ?

A: You can click the Add To Cart button below to order cards: Cards are $1.00 each.

Proceeds go to our "Pay It Forward", Conference (Education Programs) for 2023.

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©2002-2022 PARC Organization