​​

Monthly Ostomy News and Events

June Newsletter 

Monthly newsletter of the latest news and events from 
 United Ostomy Associations of America and the ostomy community.
     __________________________________________________________________________________________________________________________________

   From the President

  Our National Conference: A Gathering that Can Change a Life 

Many of you have probably been to a conference where you have sat in a dark room all day just itching to get out. The  UOAA National Conference  is not that conference. There is great power in seizing control of your ostomy health and knowing that you are not alone in that journey.  Looking back at the photos from our last conference in St. Louis I'm reminded of the joy, emotional connections, and the fun the attendees had.


At our past national conferences I have seen first hand the power of education and connecting with other people with an ostomy or continent diversion has on people. There is a reason people come back year after year and why first time attendees leave us such glowing reviews. There is no other gathering of the ostomy community that is tailored to people of all surgical types and backgrounds and welcomes all those who support them-and provides so many informative and inspiring sessions. Please attend or spread the word to all who would benefit. Be sure to 
register and secure the special conference hotel rate today. 


Please support our inspiring board member Molly McPeek on her journey to conference as she pushes her limits during a 2300 mile motorcycle ride for ostomy and continent diversion awareness, my travels to Irvine will not be merely as exciting!


I am also pleased at the amazing progress our advocacy program has made so far this year, read the report. And I am contiually amazed by the collaboration of our affiliated support groups who are thriving and trying new things such as this regional websiteeffort in the Northwest. 


Thank you for you for all that you do. 


Susan Burns





UOAA President

   ________________________________________________________________________________________________________________________


   
  Support Awareness with a Ride of Lifetime

   Follow Molly McPeek's Journey from Motown to SoCal to our National Conference


"So what does someone who struggles with hydration, skin issues, re-diagnosed with Crohn's disease recently, and now on immunosuppressant medication with issues decide to do?" Molly McPeek asks in her first blog post on  Motown to SoCal "Well simple really-go on a 2300 mile escapade of a lifetime on a Harley." ​​

She is doing all this after also battling ulcerative colitis, ileostomy surgery recovery, three more surgeries to create a J pouch, as well as an emergent bowel obstruction surgery. 


Yes, my husband and I will travel in August on a Harley Ultra motorcycle from the suburbs of Detroit crossing the heartland of America to Route 66 and finally through the Mohave desert in 100+ degree heat to Irvine, California for the 6th National Conference for United Ostomy Association of America. This means 9 nights on the road and at the end of it all, I will then be a presenter at the conference as well as social event planner. 


I found an on-line group that lead me to my first UOAA support group and I was suddenly not alone. I knew at that first meeting, I found my life purpose to live the life I wanted and support individuals just like me living with an ostomy or continent diversion so they would never have to feel so alone. However, I made my dream come true of helping others by starting "A New Normal" an ostomy support group. 

She also asks. "Why would we even do this crazy thing?" The answer does not surprise those who know her, or of her support group work and as a director for UOAA.


 Well, life is simple really that it all boils down to 2 choices when you are knocked down by life's hardships. You can either chose to remain laying down or you can choose to stand and fight-and I chose to fight. We will be raising awareness of living life with an ostomy or continent diversions and more importantly, showing people that there is no limit to what you can do. My husband and I are paying the entire travel expenses ourselves and this includes 9 nights on the road, gear, food, etc. We are asking all people who will be watching this journey to please in our honor of this courageous, slightly insane journey donate to the United Ostomy Association of America on our 
fundraising page. They are an amazing non-profit who promote the quality of life of individuals living with an ostomy or continent diversion (that's me) through education, advocacy and support. You may not pick the life circumstances given to you but you always pick how you handle them. Yes, it may require adjustments...many adjustments but you are still in control.


Come visit Molly at our conference in Irvine this August to see her story and pictures as well as learn, socialize and have a great time. Also, please follow the blog at 
https://motowntosocal.com/  to watch the preparation, route map, and then ultimate escapade as they leave Detroit in the dust on August 11th. 

    ​___________________________________________________________________________________________________________________________________

  Come Celebrate at Our National Conference


Never underestimate the power of connecting with other people living with an ostomy or continent diversion. 

Our conference schedule is packed with top experts in their field giving surgery specific education sessions and information important topics that such as avoiding complications, skin care and sexuality. And everyone should walk away inspired from our motivational speakers, but there is also plenty of time to share, connect and learn from people just like you. 


Just a few of this year's social events and gatherings opportunities include.




1st Timers Orientation
Fashion Show
21+ Meet-up at Hotel Irvine's Red Bar
Free opening night "Be Your Own Superhero" ice cream social
President's Reception at Red Bar
NuHope Fun Run
Free Closing Night Party and BBQ with Entertainment
Outdoor pool and veranda bars for socializing
Continent Diversion Meet-up
Harbor Cruise (Sold Out)




All Are Welcome. Share, Learn, Connect
August 22-26 in Irvine, California.

Inspirational Talks, Stoma Clinic, Educational Workshops, Social Events,
ASG Leadership Academy, Exhibit Hall and more!

ALL 5 days for only $125
Young Adults 18-25 $95
Companion/Spouse $75
Children $25 under 5 free


Still Time Left to get Hotel Discount

UOAA National Conference Discounted Rate of 
$129/night single/double + 10% tax and $0.13/room/night CA State Assessment Fee.

To get this rate reservations must be made
before July 31, 2017 by calling a Hotel Irvine in-house reservation agent at 
888-230-4452 or go online to 
https://aws.passkey.com/go/UOAANatlConference2017

Check  Ostomy.org  for the Latest Programming, Hotel and Schedule Information
​  _________________________________________________________________________________________________________________________

Register Today!

Thank You to our 2017 Conference Sponsors

Platinum:  Hollister

Gold: 
ConvaTec

Gold:  
Coloplast
  
Bronze:  11 Health

   ____________________________________________________________________________________________________________________________________

  Advocacy News:

  UOAA Advocacy Mid-Year Report


Jeanine Gleba
UOAA Advocacy Manager

 
We will continue to monitor the ongoing healthcare debate now in progress in Senate work groups, but in the interim I'd like to share some of the great strides we have been making behind the scenes on multiple projects and what's on the horizon.
 

Our amazing network of grassroots advocates continues to grow and since January we now have 248 people lending their voice and answering our calls to action.  My goal is to see this number double by year-end.  With over 750,000 people with an ostomy or continent diversion, I have every confidence that more will join our crusade.  If you are interested, you can  sign up here .
 
For all of those planning on attending this year's national conference I'd like to personally invite you to attend the advocacy session entitled "Advocates for a Positive Change" on Saturday, August 26th where you can hear more about what we are doing for you and how you can get involved.  I would love to meet you in person!
 
We have also started planning for Ostomy Awareness Day with kick-off events this year on Saturday, October 7th! Our awesome subcommittee has started our planning meetings and we are excited to make this the best year yet! Special gratitude is extended to our volunteers Roxanne Camp, Ellyn Mantell and Stephanie Urzi for making this all happen.  Stay tuned to learn more about this year's theme and events!
 
In addition as part of our goal to create a UOAA-branded advocacy program to reach and engage our constituents we have been busy creating a brand-new toolkit that will further empower you to advocate and raise ostomy awareness. 
 
Our dedicated volunteers on the UOAA Advocacy Committee and Subcommittee are working hard to achieve our goal of engaging, empowering, and educating patients, families and caregivers in demanding high quality health care. Another major toolkit project will include an updated patient bill of rights for people living with an ostomy and continent diversion. We need to generate a plan that will get this into the hands of as many patients, medical professionals, and hospitals possible.  If you would like to contribute an idea our outreach, please email me at 
[email protected]. We are open to suggestions and could use all the help we can get!


Advocates for a positive change.
  ___________________________________________________


  ASG Spotlight: 

  Success Story- Regional Ostomy Support Groups Collaborate on Website


By Phillip Moyle
 
Nearly two years ago, the Spokane (WA) Ostomy Support Group (SOSG) undertook an effort to reach out to our local community and later to neighboring and regional support groups, first by newsletter and later through a website.  The journey to developing a 
regional website  was not linear and is inseparable from the history of our newsletter.
Why?  We had a desire to better communicate with our local ostomate community via a small, quarterly newsletter.  Within months of the successful launch of the newsletter, a vision developed that we could reach further out to collaborate with, learn from, and support other local and regional ostomate communities, including the many ostomates who live too far out in the countryside to attend group meetings for needed support.  
Who?  The most important resources available to our community are people - ostomates, caregivers, nurses, and other supporting individuals.  Although many support groups are led by ostomy nurses, who are already very busy, SOSG has been co-facilitated since 2009 by two veteran ostomates gifted with excellent leadership and communication skills, Susie Leonard Weller (8+ years) and Carol Nelson (39+ years).  The group has also been informally supported for over 14 years by Rich Judd, Byram Healthcare, who regularly attends meetings of the Spokane OSG and five other support groups in eastern Washington and northern Idaho.  The last member of this core resource group is me, Phil Moyle, retired geologist with some writing and computer skills and the desire to research and outreach.
How?  Given our inexperience and still limited resources, we started small-scale planning in late 2015 - "Let's produce a quarterly newsletter for the Spokane support group and outlying ostomate community."  We openly discussed our goals at support group meetings to solicit ideas, sort of a market study  Then we hashed out a template, desired content, general guidelines, and delivery method(s), an important aspect, in a series of meetings and a lot of emails. Communications were both our biggest hurdle and most effective ally! Our first quarterly newsletter, launched ironically on April 1st, 2016, was well received which encouraged us to continue our outreach efforts. 
Should we go regional?  Two processes then took place: (1) Rich Judd began a process of "pollination" by dropping off our newsletter while visiting other support groups; and (1) we in Spokane began discussing the possibility of a simple website to archive and spread the newsletter. Thus began the unexpected journey of outreach to and interaction with five other ostomy support groups: Coeur d'Alene, Idaho; Lewiston, ID/Clarkston, WA; Tri-Cities, WA; Yakima, WA; and Wenatchee, WA. Thanks to Rich's contacts as well as concerted efforts by our core group, effective communications were established with leaders of the groups.  Phil Moyle's participation in the October 2016 Run for Resilience in Boise, ID also helped establish contact with ostomy nurses from the Lewis/Clark and Coeur d'Alene groups as well as with Jay Pacitti, then UOAA Executive Director, and eventually with Ed Pfueller, UOAA Communications & Outreach Manager.
Can we do it?  There are plenty of free, "do it yourself" website building programs on the web.  Among them is Weebly.com. We were fortunate though that Andi Weller, Susie's sister-in-law and a professional website designer, was available to help us out.  Phil Moyle provided Andi with a series of Power Point pages that graphically presented our vision of how our regional, ostomy support website should appear.  The Power Point "website template" below was a key step in achieving the layout and content we'd planned.
  Events:2017

                         Date                   Event                           Location                          UOAA Rep

             7/17-22                 Youth Rally                            San Diego, CA                       Mary Beth Akers

               8/22-26                 UOAA National                     Irvine, CA                               Staff and MoBD
                                               Conference
            
              10/7                       4th Annual Durham             Durham, NC                          Lara Leininger
                                             Ostomy 5k                                                                               Angela Richardson

              10/14                     2nd Annual Boise                  Boise, ID                                 Megan Herrett
                                             Ostomy 5k


Contact: [email protected] to add your event to the list
   _________________________________________________________________________________________________________________

We did it!  Through input from all of our participating ostomy support groups, considerable interactive reviews & feedback, and no small amount of helpful input from Ed Pfueller, UOAA, Andi constructed an outstanding website that was launched on time, January 1, 2017.( http://inlandnorthwestosg.com/ ).  Our first regional newsletter, the " InSider  ," was completed, distributed, and simultaneously posted on the website, - successful dual launch.  
Thanks!  This was indeed a team effort.  Our appreciation is extended to the many individuals and groups who helped us to achieve our goal of uniting the ostomates, caregivers, and medical support staff in our region.
Recommendations!   Any group considering a website should first do three things:  (1)  View other ostomy support group website in the US and elsewhere; (1) define your purpose; and (3) consult with the UOAA, specifically with Ed Pfueller, UOAA Communications & Outreach Manager, for guidance.
​​

  _________________________________________________________________________________________________________________


We Want to Hear Your Local Stories!

Is your local Affiliated Support Group (ASG) doing great things? Do you have a volunteer whom you'd like to honor with a national shout-out? Are you reaching out to make a difference in your community?  Everyone loves stories about the accomplishments you and those in your group are achieving. Let us know about them for a possible feature in the next newsletter or online, and remember to send along a photo as well.   Let us help you get the word out about how you are making a difference!


Contact: Ed Pfueller 
Communications & Outreach Manager
[email protected]
1-800-826-0826


  ____________________________________________________________________________________________________________________________________



Get Ostomy Answers
New Summer Issue Available Now

 
 
From diet and nutrition to skin care to intimacy, The Phoenix ostomy magazine has answers to living with a colostomy, ileostomy or urostomy
 
 
Having ostomy surgery can create quite a number of questions. Can I still eat my favorite foods? Can I wear the same clothes? Will everyone notice? Being an active member of a United Ostomy Associations of America Affiliated Support Group is an excellent way to get many of those questions answered. Another great resource is the official publication of the UOAA, The Phoenix ostomy magazine.
​​

Each 80-page issue offers information, education, advice and inspiration to solve the many questions that come up when living with a stoma. Colorectal surgeons, urologists, ostomy nurses and seasoned "ostomy experts" pen in-depth articles you won't find anywhere else. Product reviews put ostomy accessories to the test to let you know what works and what doesn't.


Helen Baker, an ileostomate for 40 years commented, "I read the magazine from cover to cover. Thanks for all your help." The Phoenix magazine is America's leading ostomy publication written to improve the quality of life for ostomates of all ages, types and reasons for surgery.


Popular articles include Ask the Dr., Ask the Ostomy Nurse, Ask the Ostomate and features on ostomy patients who have come back stronger than ever after surgery. Each issue addresses common topics such as peristomal skin care, pouch leakage, diet and nutrition and stoma management. Also included are ostomy specific topics such as hernia prevention, food blockage, stoma prolapse/retraction and psychological aspects of life with an ostomy.


As the official publication of UOAA, revenue from subscriptions to The Phoenix support UOAA programs, services and advocacy efforts in the ostomy community. A money-back satisfaction guarantee is offered and the magazine is mailed discreetly to protect your privacy. To subscribe, call 800-750-9311 or go to  
www.phoenixuoaa.org .

     ___________________________________________________________________________________________________________________________________


Election Deadline June 30th

Voting in our National Elections has started NOW and is for individual members and Affiliated Support Groups (ASGs) in good standing with UOAA. 
Check with your local leader to see if they have voted.  

Candidate Bios   

Individual Member Ballot

ASG Ballot


All ballots are due by June 30th 2017
    _______________________________________________________________________________________________________________________

United Ostomy Associations of America| 800.826.0826| [email protected]| ​www.ostomy.org

www.ostomy.org


Monthly Ostomy News and Events













January Newsletter 

Monthly newsletter of the latest news and events from 
 United Ostomy Associations of America and the ostomy community.

www.ostomy.org

      ​​​​​___________________________________________________________________________________________________________________________________
 
From the President

It's still early in 2017 but we already have a busy year of education, ostomy awareness, and advocacy action planned for you. 
 
The year begins with an uncertain time for healthcare in our country. Regardless of personal politics, now is a time to work with UOAA and our partners to preserve critical patient protections from the Affordable Care Act that benefit our community. To maximize our grassroots efforts, we have invested in software that makes it easy to 
contact your lawmakers  and have your voice heard. 

This summer you can learn about UOAA's advocacy and educational programs and much more.  You are all invited to join us for a "Journey to a Bright Future" as we gather in Irvine, California for our 
National Conference.   I'm especially excited for our lineup of speakers and educational opportunities this year, and truly believe Irvine will be our most enriching and fun conference to date.

Read more about conference and advocacy below!  Follow these newsletters and check 
ostomy.org  as we announce the full scope of this year's events, including welcoming back the Run for Resilience Ostomy 5k. 
 
We are deeply grateful to everybody who donated to UOAA in 2016.  Your support will help us do great things in 2017. 


Happy New Year!




Susan Burns



UOAA President


      ___________________________________________________________________________________________________________________________________



      __________________________________________________________________________________________________________________________

Advocacy Alert:
Take Action on Healthcare Changes


UOAA Advocates for Critical Patient Protections in the Affordable Care Act "Repeal and Replace" Debate
 

Once again in 2017, healthcare reform is in the spotlight and it is critical that we ensure the needs of persons living with an ostomy and continent diversions are included in the stakeholder conversations.  In particular, we must first ensure the ongoing availability of quality health insurance by accompanying any repeal of the Patient Protection and Affordable Care Act (ACA) with a viable replacement at the time of repeal. Second, we must make certain that the 115th Congress preserves the basic patient protections from the ACA:

  • Prohibit discrimination against patients with pre-existing conditions
  • Prohibit lifetime and annual caps on insurance benefits
  • Allow young adults to stay on family coverage until they are 26
  • Limit patient out-of-pocket spending in a meaningful way

These protections have made it possible for many people living with an ostomy to obtain insurance coverage and protect them from stratospheric medical bills.  Furthermore, they are essential to ensuring access to quality, affordable healthcare coverage.
 
UOAA is pleased to launch a new advocacy software platform to help you take action on important initiatives, and where you can keep on top of the latest advocacy news by signing up for our Advocacy Network.  Please by sure to personalize our call to action message with your personal story for maximum impact.



Click here now to TAKE ACTION!
 
We are Stronger and Louder Together!
Please Share this Call to Action with Family and Friends.


 Please feel free to email me at  [email protected] , if you have any questions or comments.  We look forward to accomplishing great things with all of you in 2017!
 
Jeanine Gleba
UOAA Advocacy Manager


      ​​​​​​​​​​​​​​​​


      __________________________________________________________________________________________________________________________________

You're Invited to UOAA's National Conference!



      







​    








     
       






























Join us August 22-26 in Irvine, California as we gather for education, camaraderie and fun.
This year's conference takes us to Irvine, CA a place that boasts on average 280 sunny days per year. Abundant area attractions (think Disney and Pacific Beaches) may inspire you to plan a vacation around the conference dates.  After a day of inspiring talks, educational workshops and exhibits, lounge poolside under the palm trees while socializing with new friends from around the country, or explore all the area has to offer.

Inspirational Talks, Stoma Clinic, Educational Workshops, Social Events, ASG Leadership Academy, Exhibit Hall and more!

Irvine is in the heart of Orange County in Coastal Southern California and the newly updated Hotel Irvine will be the home of the conference and is a perfect base of operations for visiting area attractions. The Hotel Irvine is conveniently located 5 minutes from John Wayne Airport (SMA) and the hotel provides a free shuttle to and from the airport.

Secure Your Special Hotel Rate Today!
UOAA National Conference Discounted Rate of $129./night single/double + 10% tax and $0.13/room/night CA State Assessment Fee.  To get this rate reservations must be made before July 31, 2017  by calling a Hotel Irvine in-house reservation agent at 888-230-4452 or go online 
to https://aws.passkey.com/go/UOAANatlConference2017

Register Today!

Learn more about Conference Highlights, Features and Area Information. 


Conference Info PDF


  ______________________________________________________________________________________________________________________


2017 UOAA National Election Information

For ASG Leaders and Members of UOAA:


It's time for UOAA National Elections. This year the Management Board of Directors (MBoD) has the following openings:
  
Position Descriptions: 
Treasurer Secretary
  D irectors(3).

These two-year terms begin on January 1, 2018 for more information on requirements 
click here .

If you or someone in your group would like to help UOAA continue its mission to help ostomates on a national level, please fill out a nomination form. Remember that each form must be signed by the leader of the support group, and if that person is the person being nominated, it must be signed by another member of your leadership team.


Click Here to Nominate A Leader Today!

If you have any questions, please call the office at 1-800-826-0826.
 
Completed nomination forms need to be returned by March 31, 2017 via postal service or email, 
[email protected]




  ______________________________________________________________________________________________________________________


    Events: 2017

                          Event                      Location                 UOAA Rep

  3/12-3/14           Wound Care Institute        Branson, MO                     Susan Burns


  4/1                      Iowa WOCN Society-           Des Moines, IA                  TBA
                              Ostomy Education Day


  4/18                     Woundstock Too                  St. Louis, MO                     Susan Burns


  8/22-26/17        UOAA National                      Irvine, CA                           Staff and MBoD
                               Conference

Contact: [email protected] to add your event to the list

United Ostomy Associations of America| 800.826.0826| [email protected]| ​​www.ostomy.org

Hello to all.

I wanted to let you know that it is official-Terry (my husband) and I will be traveling to Irvine on a motorcycle-2300 miles for awareness. The fundraiser page has been launched and ALL money goes to UOAA. He and I will be covering the entire cost of supplies, hotel rooms, gas, etc as well as time off work and more. I will include the link but please share with all as this is a way to create awareness of the organization. 


As a personal note, this will be a true test of abilities of both himself and my health. We will be prepared to start an IV on either of us if needed-and we have the permission from my GI. Though I have an internal j pouch, my output is the same of an ileostomy and requires on a good day drinking 2 L of fluid so hydration is critical for me (and for him since he is driving). Also, we will be traveling with my Humira since it is an injection I am currently doing weekly and can't become warmer than 77 degrees so all kinds of planning. We have multiple back up plans for weather, if the bike breaks down, etc but it is still an enormous undertaking from packing and shipping conference appropriate clothing, to medical supplies, and more. We will be contacting news stations soon to see if they are interested in profiling the ride as we travel across the country but please share this link with your local groups as well. 


Here is the link-please share. 
https://www.crowdrise.com/motowntosocalmotorcyclerun/fundraiser/mollymcpeek

Molly McPeek
Director
United Ostomy Associations of America, Inc













UOAA's Information Line:
(800) 826-0826
www.ostomy.org


​​

Monthly Ostomy News and Events













December Newsletter 

Monthly newsletter of the latest news and events from 
 United Ostomy Associations of America and the ostomy community.

www.ostomy.org

      ___________________________________________________________________________________________________________________________________
 
From the President

The holiday season is a time for family and community. We cherish all of you who make UOAA and the

ostomy community feel like family.  Whether we know you from an event, a support group meeting, or
through online communication, we appreciate all that you do to give back and support each other.
 
With this in mind, I was not surprised to learn that the real Kris Kringle is part of our community. Read the feature below to learn about the wonderful things he is doing for ostomates and his support group in Maine!
 
If you have already contributed to our annual year-end campaign or our Giving Tuesday call to action, I thank you for your continued support that makes our mission of advocacy, education and support possible. You can always 
donate online at ostomy.org  and we encourage you to do so before the new year!
 
As you'll see in our update below, 2016 was an important year for our national advocacy efforts. Your dollars will make a difference in the quality of life for all those who have had or who may have ostomy or continent diversion surgery in the U.S. this year and beyond.
 
Happy Holidays and thank you for your support!



Susan Burns



UOAA President


      ___________________________________________________________________________________________________________________________________

Ostomy Santa


Kris Kringle is a warm presence all year long at the Waterville, Maine ASG.


Photos and story by Ed Pfueller, UOAA

The real Kris Kringle lives not at the North Pole, but in snowy Maine.

 He gives gifts to all the children he sees, travels to help those in need, and spreads goodwill and joy to all. 

He also has an ostomy, is a patient visitor and can hook you up with some needed ostomy supplies or
samples to try. 

Kris Kringle (Yes, that's his name) of the UOAA Affiliated Support Group in Waterville, Maine lives a life
where giving back is his mantra year-round. "He always has a valuable contribution to offer that others
may benefit from," says group leader Paul Faria.

At a recent meeting this fall Kris is hard to miss. He has a
jolly laugh, curly white hair, a full beard to match, and a
Santa Claus figure. He greets fellow members with stories
and a warm embrace.  Sharing his story to the support
group he remembers his own battle with colorectal
cancer in 1992. "It was totally unexpected, I had the
scope and the next day I was in for surgery," Kris recalls.

Kris is a familiar face in his community through his

volunteer work and employment at a local hardware
store.  Like the many toys he collects to give away to kids,
he also collects and gives away ostomy supplies. Word
has spread in the Waterville area that he has a colostomy
and can help other ostomates in need. He has visited
patients recently out of surgery. And he often helps
people in desperate need of supplies, or who'd simply like
to try a new product.


During the Christmas season, Kris Kringle is tireless. His visits include homeless shelters, special needs facilities, daycare centers, and nursing homes.  
Last year he made 104 visits with 1500 presents and traveled 1600 miles. His sleigh- a red compact car with "Kringle" adorning the personalized plates. 
 
About 5-6 years ago his two worlds came together. "I was asked to visit a little girl, about 7, with a permanent ostomy," he says.  "I found a rag doll with an ostomy attached to give to her." When Kris met with her and her family she sat on Kris's lap and he let her touch his colostomy pouch. "Momma, Santa has a hole in his belly

just like me," the little girl said. "Well with that me, the mother, the relatives- we all started crying," Kris remembers.

The Christmas season has not always been a happy time for Kris. Two days before Christmas one year he lost his 15-year-old son to a car accident. "My other son gave me focus that he would have wanted me to continue my Christmas visits," Kris says.
 
Throughout the year you can find Kris Kringle spreading cheer wherever he goes. At his favorite restaurants he folds dollar bills into fun shapes like diamond rings and gives them away to the children

he meets. The giving can be contagious with grateful parents sometimes picking up his tab months later. 

 As the support group meeting ends Kris laughs with members and fetches a barrier strip from a supply box
in his car for a man recently out of surgery to try. Since October, he has been making visits as Santa Claus. It's hard to imagine another Kris Kringle can match this level of caring this holiday season. 

      __________________________________________________________________________________________________________________________

Advocacy News

Jeanine Gleba and Jay Pacitti, UOAA

This has been a busy year!  We have engaged in initiatives and have begun building a foundation for an advocacy program that will allow you to have your voices heard on the issues that matter most.

Competitive Bidding Update
 
Earlier this year we opposed the Presidential FY 2017 budget proposal to expand Medicare Competitive Bidding to include ostomy and urological supplies.  We are working with a coalition to ensure these supplies are not included in competitive bidding.  Please 
Click Here  to read our position statement as well as a letter sent from the coalition to the Senate Finance Committee and House Energy and Commerce Committee in

the Spring.
 
We are pleased to report that as a result of these efforts and conversations at the committee level, the expansion of competitive bidding did not move forward.  We continue to closely monitor this issue, and are diligently preparing with the coalition should this arise again, including creating a website that addresses access issues.  We will let you know when this website is launched.

Progress in New York State 
 
On a more local level, you may remember that in 2015 a state health mandate required all commercial health insurance policies in New York State to cover ostomy supplies.  There remains only one health insurance plan in NY that does not cover ostomy supplies:  Child Health Plus (CHP).  Although the majority of the plans participating in CHP have volunteered to include ostomy supplies, they are not required to do so. 
 
Earlier this year, Senator Kemp Hannon and Assemblyman Kevin Cahill introduced legislation (S01400/A01038) to ensure coverage of ostomy supplies in NY CHP program.  Both UOAA and the WOCN Society have written letters supporting this legislation. (
Read the UOAA letter ).  Please help us to close the last gap in coverage in New York State.  If you know of a child with an ostomy who is covered by NY CHP, it would be a great help for their parents to contact Advocacy Manager Jeanine Gleba [email protected].  One of the best ways to convince legislators to close this gap is to share real examples of the need for coverage.  Meanwhile, we will continue to work with the WOCN Society and legislative staff on this issue in the coming months.

We Need Your Access Story
 
A reminder to all:  if you have a story about access to ostomy supplies that will help us demonstrate why access to the proper supplies is critical for each individual living with an ostomy, please read about our initiative and share your story. 
Share Your Story Now

A New Year

Following the presidential election, we are carefully monitoring the transition team's plans and statements

as they relate to health care coverage and costs.  There is a good deal of uncertainty, and we will remain vigilant so that we can respond to issues that may arise.
 
This holiday season, UOAA is grateful for all of your support with our advocacy efforts whether you have joined our Advocacy Network, shared your story online for our #MyAccessMatters initiative, helped raise awareness on Ostomy Awareness Day, or made a donation to strengthen our advocacy program.
 
We look forward to working together with you to continue to address the issues facing people with an

ostomy or a continent diversion, and to continue making a positive impact in 2017.
      ​​​​__________________________________________________________________________________________________________________________________






​      __________________________________________________________________________________________________________________________________

Still Holiday Shopping?

Holiday shop and give back for free at the same time using Amazon.com for your holiday purchases

this year? Order online through this  AmazonSmile link and 0.5% of your purchases will go to support
UOAA at no extra cost to you! 

Bookmark it Today! 
https://smile.amazon.com/ch/13-4310726 


      __________________________________________________________________________________________________________________________________

Find the Right Odor Fighter

Ostomy Nurse Joan Junkin offers exclusive advice on the best products, techniques and strategies in The Phoenix magazine 
Winter Issue.
 
Find answers to the challenges of this common ostomy complaint in Odor Fighters, written by ostomy nurse Joan Junkin. From internal deodorants to toilet "drops" to liquid pouch deodorants, Junkin covers all the

many strategies to make life with an ostomy pouch more pleasant to the nose. The in-depth article is
exclusive to  The Phoenix  ostomy magazine, the official publication of the United Ostomy Associations of America.  Read more.


      __________________________________________________________________________________________________________________________________







​      __________________________________________________________________________________________________________________________________


Events 2017

                      Event                                                Location                      UOAA Rep

 8/22-26/17                     UOAA National Conference                   Irvine, CA                                 Staff & MBoD   

Make a Year-End
Donation

Contact: [email protected] to add your event to the list

United Ostomy Associations of America| 800.826.0826| [email protected]www.ostomy.org

Greetings,​​​​​​​

WOCN was a good meeting, Christine and I met many great nurses that are interested in the 5k's, starting new groups, love our information on the website and are anxious for the NPG's. We met with representatives from WOCN, Hollister, Coloplast American College of Surgeons, Corstrata, and ConvaTec.
We talked up the conference, there were many CA nurses in attendance, and there was good reaction to the Irvine mtg.

Thurs. June1 thru Sunday June 4th the conference planning committee will be in Irvine to finalize the plans for conference. We all will have email and will check it regularly.

I hope all have a great and safe Memorial weekend. I will be out of the office this Friday thru Monday.

Thank you,
Susan

Susan Burns
President, UOAA
United Ostomy Associations of America


[email protected]
(636) 866 8192-cell
(636) 926 2737-home office
UOAA information line;
(800) 826 0826
www.ostomy.org


                                                                                                                                                                                                                                                                          Monthly Ostomy News and Events


October Newsletter


Monthly newsletter of the latest news and events from 
 United Ostomy Associations of America and the ostomy community.

                                    www.ostomy.org

                 ​​    _________________________________________________________________________________________________________________________________________________


A Resounding Success!
Ostomy Awareness Day October 1, 2016
  


Ostomy Awareness Day ("OAD") was a huge success this year - and your participation made it happen.  Thousands viewed the OAD kick-off video and people loved hearing the stories you submitted in our #IAmResilient social media campaign.  





Our theme of resilience was embraced as far away as Kenya.  We hope that those having or considering these surgeries were reassured of a positive future and that they can bounce back into life! 
Congratulations to the winner of our 
Instagram contest winner Teresa Stuth from our Tyler Texas ASG! She shared "I've had my urostomy since I was 5, 46 years and I'm still going strong!"


In addition to social media, newspapers across the country published your letters to the editor, in cities that included.


Montgomery, AL
Sierra, AZ 
Los Angeles, CA
Montrose, CO
Wilmington, DE
Hilo, HI 
Clinton, IA 
Peoria, IL
Columbia Falls, MT
Exeter, NH
Burlington and Cherry Hill, NJ. 
  

Proclamations declaring October 1st as National Ostomy Awareness Day were issued by by the state of New Jersey, by the cities of Peoria, IL, Montgomery, AL and by the Counties of Cape May and Ocean, NJ.  We look forward to working with all of you next year to build on this momentum.

This year UOAA hosted a live Twitter Chat with special guests Gaylyn Henderson, Dr. Brian Stork, WOCN Joy Hooper, and Keagan Lynggard.  Our  #OADChat Twitter activity about resilience had a reach of 40,004! 


Corporate partners got involved not just in sponsoring the 5k events, but also by hosting awareness activities.  ConvaTec spread "ostomy love" by selling 700 of their "I Can Celebrate" t-shirts with the proceeds benefiting UOAA. 



An OAD celebration with educational and inspirational speakers was held at Coloplast with featured speaker Ted Vosk from Ostomy United.

Thank you to all who volunteered or participated to celebrate this important day.  Let's continue to spread our message that we are resilient throughout the year!


            ​ _________________________________________________________________________________________________________________________________________________

  Hundreds Take Part in Run for Resilience

Kids run at the Inaugural Boise Ostomy 5k


All around the country people from all walks of life came together in support of ostomy awareness. First-time 5k participants and those new to the ostomy community joined  longtime supporters for three weekends of special events this October. 



In addition to nearly 100 volunteers between the 4 events, runners and walkers in each location totaled 200 in Durham, NC, 150 in Boise, Idaho, 50 in Birmingham, AL, and 45 who braved the dire weather forecast for October 15th in Portland, OR!   Meanwhile, 87 people from 29 states walked or ran in the 3rd annual Virtual 5k, with large teams formed in Stillwater, OK and by the Carmichael Ostomy Association in California.

Thanks to all our organizers and local and national sponsors who made these events possible! And a special thank you to our Platinum sponsors and their representatives who participated and made these truly special events for ostomy awareness!

Platinum Sponsors:

Finish line at the race that started it all in Durham, NC.

Shire: Gold Sponsor

Carmichael Ostomy Association in California was one of several groups and individuals to host their own "Virtual" 5k event.

We look forward to having even more of you join us next year! Check out all the fun photos of these inspiring events and get news and updates by following the  Run for Resilience on Facebook  and for more info visit  Ostomy5k.org

             _________________________________________________________________________________________________________________________________________________

​ When Holiday Shopping Think of UOAA




United Ostomy Associations of America has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide.  Visit Our Donation Page  to see how you can support our educational programs. Occurring this year on November 29, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways to the charities and causes they support. 

Amazon Shoppers!


Order online through this 
AmazonSmile link  and 0.5% of your purchases will go to support UOAA at no extra cost to you! 


Bookmark it Today! 
https://smile.amazon.com/ch/13-4310726 

             _________________________________________________________________________________________________________________________________________________

 
 FRIENDS OF OSTOMATES WORLDWIDE-USA
 
Friends of Ostomates Worldwide-USA is grateful for the product and financial donations that come from UOAA Affiliated Support Groups. It has come to FOW's attention that some ASGs are finding it difficult to store the donated products that their members bring to meetings and may not have the financial resources to send them to FOW. FOW-USA is also a non-profit group and we cannot help you with the shipping costs.  FOW suggests that you ask individual members to ship their supplies directly to their office. FOW will provide them with a receipt and the shipping costs are tax deductible. Products may be taken out of the boxes, placed in a zipped plastic bag with the torn end of the box that has the product information. If people have a small amount, the least expensive way may be to use a prepaid postal box. If they have large quantities, it is more economical to send one large box than two smaller ones. UPS gives a discount for AAA and AARP members. If you have questions, email 
[email protected] or check our website  www.fowusa.org .

Send financial and product donations to FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539.  You will make a difference in the life of a needy ostomate.


           _______________________________________________________________________________________________________________________



 OSTOMY HOME SKILLS RESOURCE AND SURVEY

UOAA has been working with the American College of Surgeons for the last 6 years in the development of 
patient education programs  that surgical professionals can use with their patients.  The resources are designed to help new patients safely care for themselves after their operation. American College of Surgeons need your help to better understand your surgical experience.  The  survey  will take 6 minutes of your time.  Answering will not help you directly but it may help people with an ostomy in the future.  Only the group response will be reported and American College of Surgeons will continue to work with UOAA in the improvement of education and skill training programs for patients needing an ostomy operation. Any questions can be directed to Amanda Bruggeman at 312-202-5263 or [email protected]. Please respond by December 1, 2016.

https://www.surveymonkey.com/r/patientostomy


             _________________________________________________________________________________________________________________________________________________


 Events: Fall 2016 

Event                               Location             UOAA Rep


Regional Ostomy Education Conference

11/5

Chicago, IL

Susan Burns

Contact: [email protected] to add your event to the list

             ​​_________________________________________________________________________________________________________________________________________________


​         ___________________________________________________________________________________________________________

United Ostomy Associations of America| 800.826.0826| [email protected]| ​​www.ostomy.org


Monthly Ostomy News and Events













March Newsletter

Look for this monthly newsletter to keep you updated on the latest news and events from the
 United Ostomy Associations of America and the ostomy community.







    From the President

I am very pleased with the great response to our Affiliated Support Group 
(ASG) Census!  These surveys will help us achieve better communication and be responsive to the needs of our local                          ostomy communities.  Thanks to all who have participated so far.  If you are an ASG leader who received a survey it is     not too late to get into the incentive drawing!  


Fill out the survey at: 
https://www.surveymonkey.com/r/2016ASGCensus   
If you submit by March 31st, we will enter your group into a drawing for one of five $50 gift cards to use for your ASG.   We do need everyone's response by April, 30 2016.


Your updated information along with your active membership in UOAA will help ensure the continuation of your  group's listing in the Phoenix Magazine and our online ASG finder.  The office gets calls every day from people looking  to join ostomy groups or wishing to know which groups accept donations of supplies.  We want to ensure that they are  reaching the right contact people with most updated information.  
 
Also, remember that we can assist in everything from general questions about your tax-exempt status, educational resources, to walking you through the steps of setting up your own ASG website.  We are here to help.

In advocacy news, I just got back from representing UOAA

at the Digestive Disease National Coalition's Annual
Spring Public Policy Forum on Capitol Hill in Washington, DC. 
It was an empowering gathering with dozens of other leaders
working for patient advocacy.  I look forward to forging new
relationships with those working for a common cause.  Patient
advocate Lynn Wolfson provided training at the forum.  See her
advocacy petition in the news item below.  We look forward
presenting new advocacy information in this newsletter in the year ahead.
 
Thank you for all that you do!


Susan Burns 
UOAA President

__________________________________________________________________________________________________________________________________

        Advocacy Alert: 

Lynn Wolfson, a digestive disease patient advocate, has started a petition to make handicap restrooms more accessible to people who have ostomies, feeding tubes, IV lines, urinary catheters, or other similar medical devices.

Please consider signing her petition for Lynn's Law today!


Lynn is an ostomate with Hirschsprung's Disease.  Her proposal includes having a hook and a shelf by the toilet, a sink in all handicap stalls, a Sharps red medical disposal box for used syringes and a universal access card for those whose doctor deem it necessary to use a handicap stall.  Click on the link below and share with your ASG and friends.  Please be sure to verify your e-mail after signing the petition. She needs 100,000 signatures by April 9th!


https://petitions.whitehouse.gov/.../pass-lynns-law-maintain-...


__________________________________________________________________________________________________________________________________

     ASG Hosts Successful Ostomy Fair
 
       By UOAA Executive Director Jay Pacitti
 
Despite the rain, there was a strong turnout at the Ostomy
Product Fair & Luncheon held by the Clearwater, FL Ostomy
Support Group.  Members of many support groups in the region
traveled to the event, which logged over 200 participants.
 
In addition to the opportunity to gain information from over 20

manufacturers, suppliers, and other local businesses, the group was treated to a complimentary lunch, door prizes, and an inspirational and humorous talk by national speaker and comedienne Brenda Elsagher.
 
The fair was a wonderful opportunity for individuals to connect, support one another, and to share their stories.  Attendees ranged from people who had had surgery as recently as a few months ago, to people who have been living with an ostomy for over 40 years.
 
Support Group President Marilyn Bossard thanked the large team of volunteers who helped create the event, stating, "many hands make light work."
 
If your affiliated support group is interested in creating an ostomy fair in your area, the Clearwatergroup is happy to help with tips and advice. Contact them at 
(727) 490-9931 or  [email protected].



_________________________________________________________________________________________________________________________
  
     Ostomy United is back with New
     Website, Events!
 
Join the the all-ages team of triathletes of all skill levels as
they return to shatter stigmas for another year. 
Look for a team or event near you, and show your support.

Also, follow the blog of founder Ted Vosk as he trains for a

full Ironman race later this year!


Visit: www.ostomyunited.org


__________________________________________________________________________________________________________________________________

     Events: April/May 2016

           Date                            Event                                                               Location                                                   UOAA Rep

          4/9                              CCFA Education Symposium              Chicago area               David Rudzin ​ (UOAA Past President)



         4/16                             WOCN Iowa Affiliate Ostomy            Rock Island, IL                                       David Rudzin
                                                              Education Day     

         


         4/29-5/2                   Mid-Atlantic Regional Ostomy           Sterling, VA                      Jay Pacitti - Executive Director
                                                              Conference                                                                                 
                                                                                                                                                                                                   



         4/30-5/3                   American Society of Colon and         Los Angeles                      Susan Burns - President
                                                Rectal Surgeons- Annual                                                                                                                                                                
                                                Scientific Meeting



Visit  www.ostomy.org  for event listings.



__________________________________________________________________________________________________________________________________

     Articles to Share Needed!

When our ASG census is complete we will have a solid idea of how frequently Articles to Share are needed by individual groups.  If your group has a contributor who would be willing to have his/her work reprinted by other ASGs, please contact the office to pass along that individual's contact information.  You can greatly aid other ASGs by sharing this information.  Please send any articles or leads to Ed Pfueller, UOAA's Communications and Outreach Manager, at [email protected]




www.ostomy.org


United Ostomy Associations of America| 800.826.0826[email protected]| www.ostomy.org

STAY CONNECTED:

UOAA President’s Message, February 2016  
New Beginnings

Dear members, partners, and friends of UOAA,

A few weeks after my ostomy surgery, I attended my first affiliated support group meeting. I walked into a room with people much older than myself, yet I felt acceptance immediately. These were the people who taught me how to live with an ostomy. They were there to share and listen. These support meetings were vital as I began a new chapter in my life and recovery. I knew at that moment that I wanted to help the next person that walked into our group.

As I begin my second term as President of UOAA, I never could have imagined then that I'd have the honor of working for all of you who do so much to reach out to that next person in need of support.

In the spirit of renewal and new beginnings, UOAA is now embarking on a plan for our second 10 years. This year, we have three main focuses: outreach, advocacy, and continuing to reach out and support our Affiliated Support Groups (ASGs).

As part of the effort to support our ASGs, we are conducting a “census” of our ASGs. Every day, UOAA receives calls from people who are seeking local resources, and we want to give successful referrals. We would like to have uniform information for every ASG, so even if you recently updated your contact information with us, please complete this survey. We mailed the survey with your annual dues notice, and also sent it to you in an email last week. Thank you to all of those who already filled out this important survey. Only one response is needed per ASG. If you have not yet done so, please complete the survey now at this link:


Thank you!

To assist the MBoD in reaching our goals we have moved forward with building our professional staff led by Executive Director Jay Pacitti. We are pleased to welcome Ed Pfueller as our Communications and Outreach Manager. Ed brings 15 years of experience in journalism and nonprofit communications. This investment will help us expand our reach and connect to prospective advocates, and those in need of peer support and education.

Ed will work on public engagement with a soon-to-be-announced Advocacy Manager. UOAA’s advocacy program will include advocating for legislative initiatives, and empowering local support groups to advocate locally through education, research, and activism.

If you have called the office in Kennebunk, Maine the last few months, then you have had an opportunity to speak with our helpful staff: Alicia Aylward, Office & Program Coordinator, or Belinda Hayden, Office & Program Assistant. Bob Baumel remains our committed webmaster and continues to serve UOAA from Oklahoma.

We are excited to be in the planning stages for our 6th UOAA Conference August 22-27, 2017 in Irvine, California. For those seeking an opportunity for education and fellowship this year, consider attending the Ostomy Support Group of Northern Virginia’s 2016 Mid-Atlantic Regional Ostomy Conference April 29, 30 and May 1, 2016, in Sterling, Virginia. Joanna Burgess, a childhood bladder cancer survivor and CWOCN, will serve as the keynote speaker.

Thank you to all who supported our year-end donation campaign – your support is crucial in helping us reach our goals. We know that you have many worthy causes to which you can give. Thank you for choosing to support UOAA.

Volunteering for the ASG in St. Louis and at the national level for UOAA has been an experience of a lifetime. I know that what you do as a volunteer in your ASG group, as a patient advocate, or as a qualified visitor makes a difference in the life of the person who has had or will have ostomy surgery.

As always, thank you for all that you do.

Susan Burns
UOAA President