Uncategorised

Who is ready for some Camp UBPN 2024 Information!!!!! 

Registration website will go live December 1!!! I wanted to get information to you so you can start planning!!! Also, if you are going to be flying to St. Louis, I suggest not waiting until later to book your flights! Last year going to Denver, the 3 months prior to camp the fares skyrocketed!!! I would book your airfare after you get registered, as soon as you find a good fare!!!!

UBPN Camp 2024!!!

Location: YMCA of the Ozarks, Potosi, Missouri

Dates: July 18 – 22, 2024

UBPN CAMP 2024 is a family camp for all of those affected by brachial plexus injuries (adults and children). Speaker sessions include discussions with brachial plexus specialists and therapists, round table discussions for the injured, parents, and siblings, group and individual activities including rock wall climbing, swimming, water activities, archery, zip lining, and much more!

EVERYONE UNDER 18 MUST BE ACCOMPANIED BY AN ADULT!!! This is not a camp that you send your child to for the weekend without you!

The cost for camp will be $399 per person for ages 5 and up. Ages 4 and under will be $25. UBPN's goal is to have all of those injured attend for free, and our second goal is to have the family members attend for free, also! This will take a lot of fundraising!! The organization is working on some fundraising opportunities, but you can also come up with some of your own in your community. Here in my community, I have started an annual golf tournament. We need to raise at least $40,000 to cover the cost for the injured, and to cover all we need to raise at least $130,000. We can do it if we all work together!!! Everyone pays until goals are reached.

There are a few options for lodging:

GUEST ROOMS: Hotel style rooms that can accommodate up to 4 people. Each room has 2 queen beds. Bathroom with exterior sink and vanity. Table and chairs. Walkout balcony with seating and a lake view.

LOFT ROOMS: AVAILABLE FOR AN UPGRADE CHARGE OF $120 (19 AVAILABLE)

These rooms can accommodate up to 6 people. Upper Level has a couch and 2 roll-a-way beds, sink & vanity, table & chairs, small refrigerator. Lower Level has 2 queen beds, bathroom w/ exterior sink & vanity, balcony with lake view.

LAKE VIEW CABINS:AVAILABLE FOR AN UPGRADE CHARGE OF $600 (10 AVAILABLE)

(SIDE BY SIDE DUPLEX UNITS (ACCOMMODATES UP TO 5 PEOPLE ON EACH SIDE)

Each side has bedroom with full size bed, set of bunk beds and 2 roll-a-way beds, bathroom, living area with couch, table & chairs, stone fireplace, small refrigerator & microwave, screened-in wrap around porch.

FOREST VIEW CABINS: AVAILABLE FOR AN UPGRADE CHARGE OF $600 (9 AVAILABLE)

(SIDE BY SIDE DUPLEX UNITS (ACCOMMODATES UP TO 5 PEOPLE ON EACH SIDE)

Each side has bedroom with full size bed, set of bunk beds and 2 roll-a-way beds, bathroom, living area with couch, table & chairs, stone fireplace, small refrigerator & microwave, screened-in porch with rocking chairs.

THERE WILL BE A $75 NON-REFUNDABLE REGISTRATION FEE APPLIED TO EACH ROOM!!! If your family size requires more than one room, or if you choose more than one room you will have to pay the non-refundable $75 per room registration fee on each room.

CANCELLATION POLICY:

If you register, and then cancel BEFORE December 1, 2023, you can get what you have paid minus the $75 non-refundable registration fee.

If you cancel BEFORE February 1, 2024, you can get 50% of what you have paid for camp, not including the $75 non-refundable registration fee.

If you cancel AFTER February 1, 2024, you will forfeit all monies paid. You can transfer your spot to another family.

Any questions, contact Kimberly at: This email address is being protected from spambots. You need JavaScript enabled to view it.

TBPI’s your help is needed!

Up to $100 compensation for your TBPI experience and wisdom.

* UBPN is supporting this research because TBPI patient empowerment, health, and wellbeing is its goal & purpose.

BRIEF:

  • 32 TBPI volunteers needed (or possibly more).
  • $50 compensation for an estimated 50-60 minutes for participation in each 1 of the 2 studies. Volunteering for both studies doubles the compensation to $100.  
  • Your TBPI experience and feedback are needed can help improve how newly injured TBPIs are medically treated. Participate in either 1 or both of 2 of these TBPI research studies funded by National Institutes of Health (NIH), conducted by the BPI Team at the Washington University School of Medicine in St. Louis. Both studies aim to improve the TBPI patient’s quality of care and are specifically TBPI-oriented from previous TBPI reported experiences.

You may participate in both studies if the below requirements are met:

  • 25 TBPI volunteers: who have had surgery for their TBPI at some point. No time frame necessary.
  • 32 TBPI volunteers: (conducted in 2 phases) 16 partial BPI & 16 complete BPI (complete = all 5 nerves injured at the time of injury / partial is not all 5 nerves injured)

Aim 3 - BPI Outcomes Assessment - UBPN recruitment details (R01 NIH Grant)

BRIEF: “Find and fix any “blind spots” within current medical assessments for TBPI medical treatments.”

  • 25 TBPI volunteers: who have had BPI surgery - date of injury not important for study.
  • Volunteers to complete: (20-25 min estimated to complete)
    • 2 Demographic Questionnaires: (brief)
    • 3 BPI related questionnaires: DASH, SF-36, & Postoperative Impact of BPI
  • 1 Interview via Zoom: (20-30 min estimated to complete) 
  • Time requirements: under 1 hour total for $50 compensation via check 
  • STUDY BRIEF & CONTACT INFO: click here

TBPI JOURNEY GUIDE Participation - UBPN recruitment details (R03 NIH Grant)

BRIEF: “A BPI Guide that’s like a coach to help the newly injured navigate recovery as best as possible.” 

  • 32 TBPI volunteers: (study conducted in 2 phases) date of injury not important for study.
    • Phase 1: 16 TBPI volunteers (8 partial BPI & 8 complete BPI/pan-plexus).
    • Phase 2: 16 TBPI volunteers (8 partial BPI & 8 complete BPI/pan-plexus).
    • 16 partial BPI & 16 complete BPI(complete = all 5 nerves injured at time of injury/ partial is not all 5)
  • Demographic Questionnaire (brief in length)
  • TBPI Journey Guide: volunteer to read existing guide.
  • Feedback survey: after the guide has been read.
  • 1  interview via Zoom: (20-30 min estimated to complete, after Feedback survey is completed) 
  • Time requirements: under 1 hour total for $50 compensation with Amazon.com gift card
  • Anonymous: no identities disclosed with research results.
  • STUDY BRIEF & CONTACT INFO: click here

"As a TBPI of almost 19 years, the last 14 of those I’ve remained involved with UBPN, part of helping & fighting for TBPIs wellbeing and health. I firmly believe this research work will profoundly improve the overall medical treatment of all future TBPIs. For once, the “whole-individual” (not just parts of a damaged body) is being considered and addressed during their personally unique experience of TBPI. From devastation this injured can wreak, a path has been charted out to encourage the newly injured’s engagement and empowerment. Help us make sure this guide is worthy for all TBPIs!" - Christopher Janney, President, UBPN Board of Directors

PS: For research publications by Dr. Christopher Dy, these two studies' lead researcher, click here: PUB-MED listing of all Dr Dy research (119 publications) or including “brachial plexus” (27 publications) only.

Christopher J. Dy, MD MPH FACS | Assistant Professor
Division of Hand and Microsurgery | Department of Orthopaedic Surgery
Division of Public Health Sciences | Department of Surgery
Washington University School of Medicine
twitter: @ChrisDyMD | nerveresearch.wustl.edu
NEW Podcast: The Upper Hand – Chuck and Chris Talk Hand Surgery

 

 

Click on the picture to go to the website to learn more about Myself Belts

to shop or click here

 

 

 

 

 

Over the past year, the United Brachial Plexus Network (UBPN) has seen changes in the leadership and Board of Directors (BOD). As many of you have heard, we've had a changing of the guard at UBPN, and Richard Looby, our long-time President of UBPN (12 years, in fact), has decided to pass the torch into others’ capable and willing hands. There have been some changes within the Board of Directors as well. 

While we are excited for the future of UBPN, we would be amiss if we didn’t recognize the tremendous impact and gifts that those who have left their official positions have had on the organization and our BPI community as a whole. We are both incredibly grateful for those who have spent so many years serving our community and very excited about the new ideas and energy we have coming in.  It is with heartfelt gratitude that we say farewell in an official capacity to those who have stepped down from the BOD after many years of dedication and service, although never a goodbye!  Each one has dedicated countless hours of time and effort which have been invaluable to UBPN as well as the BPI community.  We all know and realize that many of you have benefited from their commitment and service. We want to thank Rich Looby, Kara Rosenberg, Courtney Widzinski, Mackenzie Rutherford, Amy Johnson, and Dan Aldrich by sharing with you some of their stories and contributions over the years.

 

Rich Looby

  • First came into contact with the BPI community when UBPN was still its previous version, Erbs Palsy Injury Resource Group (EPIRG) in 1997 after his daughter Kailyn was injured during birth with an obstetrical brachial plexus injury (OBPI)
  • Wrote an article (2001) in UBPN's (then biannual) magazine, Outreach, about 504 rights, IEPs, and other ways to advocate for children which led to him joining the BOD in 2002
  • 2004 became Vice President and then President in August 2008
  • Always willing to share his personal experience regarding Kailyn’s birth, the immediate period following her birth with his realization that she was injured, his struggle with guilt and feeling as though “he should have prevented this from happening” as a Dad/Husband, and how this has fueled his desire to spread awareness and prevention of this injury from happening to any other child
  • Moderated numerous “Dad Groups” at UBPN’s camps
  • Always shouldering without hesitation the never-ending list of tasks and background activities that must be completed on a frequent basis while serving in the capacity of President of an all-volunteer organization such as UBPN (the list is well beyond comprehension)
  • Is stepping back but not away from the organization to have more time to spend with his family and other interests, always willing to serve in the capacity of “Past President” to help the organization through this transition
  • Continues to serve as a resource for IEP/504 information for the BPI community
  • Has helped secure funding for UBPN, assisted organizing get-togethers in the greater Boston area, spoken on behalf of UBPN and father’s everywhere numerous times



Kara Rosenberg

  • Joined the BOD in 2011 after being an active part of our community for 11 years
  • Mother to Jared who was injured during birth 20 years ago
  • Has been a staunch supporter for mothers and their injured children 
  • Has an amazingly huge giving heart worn on her sleeve at all times
  • Acted as an advocate to help those injured get the care they need
  • Instrumental in helping raise humongous amounts of funding to allow UBPN to pay for camp so any and all could attend
  • Always coming up with creative ideas of how to better fundraise and network, thinking outside the box and making a relentless amount of phone calls/emails tirelessly trying to obtain even one more fundraised dollar
  • Her considerable passion and ability to fundraise leaves big shoes to fill and it will certainly take all of us (and then some) to do it

 

Courtney Widzinski

  • Was injured in a car accident, leaving her with a Traumatic Brachial Plexus Injury (TBPI) many years ago 
  • First joined the Board of Directors in 2002
  • Has served as secretary for the Board of Directors in the past
  • Served as part of the Outreach (quarterly newsletter) and Scholarship committees
  • Has been a substantial support to the TBPI community, being available to connect with others with a TBPI, understanding their perspective, and offering support
  • Is very outspoken can always be counted on for a good laugh, and has a longtime love for Jimmy Buffett

 

Mackenzie Rutherford

  • Had the privilege to grow up with her dear brother, Jared, and be closely involved with UBPN from an early age 
  • Passion for the organization grew, and she served on the Junior Board of Directors (JBOD) in 2017 where she was quick to provide valuable feedback about the teen and sibling perspective
  • Served as the Vice President and President of the JBOD
  • Has been a champion for teens and siblings within the UBPN community 
  • Joined the general Board of Directors in 2019 after graduating from the JBOD
  • Served as secretary for BOD and continued to present ideas and suggestions for the good of the UBPN community at heart

 

Amy Johnson

  • First discovered UBPN while researching Erb’s Palsy for her 9th-grade health science fair which in turn was the manner in which she finally learned about what was “wrong” she says with her arm
  • In 2006, she joined the Board of Directors, sharing her passion for learning about this injury
  • Her passion for knowledge continued during her 14 years of service with UBPN which included obtaining her Master’s Degree in Occupational Therapy and her Doctorate Degree in the field as well
  • Ongoing advocate for research within the BPI community and professional field
  • Served on many committees including Awareness Program, Outreach (quarterly newsletter), Scholarship Committee, and Professional Liaison
  • Attended the 2019 Narakas Symposium in Amsterdam, Netherlands as a UBPN representative 

 

Dan Aldrich

  • Received a traumatic global brachial plexus avulsion (C5-T1) in 1986 at 18 yrs old while competing in a water-ski racing tournament 
  • Since 2006 has been active on the UBPN message boards often offering support and motivation for those seeking to be physically active again 
  • 2007 convinced a fellow TBPI on the message boards (UBPN’s current president) to join him in Mexico to meet-up with another TBPI and learn how to waterski one-armed. While none of the three had met in-person before, each had designed and fabricated their own “BPI slings'' from a dire need to remain athletically engaged
  • Since 2007 has made and shipped well over a thousand custom fit BPI “Aldrich Athletic Slings” (at no profit to himself) for those in need (including numerous BPI para-athlete Champions and Olympians) which many define as “life-saving” 
  • 2011 joined the BOD, serving on the TBPI Support Group Team, and eventually serving in the role as Vice President
  • Has arguably spoken with more TBPIs than anyone else on the planet
  • Retired to fulfill his passion as current President of the North American One-Armed Golfer Association (NAOAGA).

 

We at UBPN will miss working with all of you amazing individuals, Rich, Kara, Courtney, Amy, Mackenzie, and Dan and know we’ve been lucky to have you be part of our team for as long as we did! Thanks for all your years of hard work, support, compassion, contributions, and please trust that UBPN’s doors are always open for you! 

New ideas, bright strength, recharged fervor in the Presidential role is currently being filled by Christopher Janney who has served on the Board of Directors since 2008. He offers great perspective stemming from his traumatic brachial plexus injury in 2002.

Our Vice President is Jordyn Whiting. She has a brachial plexus injury from birth and has been on the Board of Directors since 2019.  

We want to welcome Rachel Storms as our newest member of the Board of Directors and as our Social Media coordinator.  Rounding out the rest of the BOD is Kimberly Walker and Tanya Jennison, long-time dedicated and resilient members.  Please join us in welcoming new members, congratulating new positions, wishing well to members stepping away, and reminding ourselves that it takes a community to spread awareness, offer support, fundraise, champion potential and raise a village such as our BPI community!

Sincerely,

The United Brachial Plexus Network Board of Directors

Christopher Janney, Jordyn Whiting, Kimberly Walker, Tanya Jennison, and Rachel Storms

You are here: Home Uncategorised

Contact us

We look forward to your comments and suggestions!

  • Address: 32 William Road Reading, MA 01867
  • Phone: 781-315-6161
  • Website: ubpn.org
  • Email: info@ubpn.org