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Mended Hearts Central Region Every Beat of My Heart Volume 1, Issue 1 3rd Quarter 2014 Central Region RD: Jana Stewart ARDs: Bruce Norris (Ohio, Michigan) This year the Central Region had more members attending the conference than any other region. Sixty-one members were in attendance from the Central Region, which included 17 MLH members. There were 14 Central Region chapters represented at the conference. The Louisville Chapter #11 had the most attendees with 12 members participating. Seven MLH groups attended with the Cincinnati group, Columbus group, West Michigan and SW Pennsylvania groups having 3 attendees each. Reports show that everyone had a great time and thought that the conference was educational and very worthwhile. Becky Witt (Ohio, Kentucky, West Virginia) Linda Mason (Indiana) Jo Ann Kats (Kentucky, Indiana) Jana Stewart (Indiana, West Virginia) I N S I D E T HI S I S S UE : Conference Photos 1 National News 2-3 MHI/MLH Updates 4-9 MHI Press Release 10 Regional Awards 11 CHD Support 12 Activity Trackers 13 Contact Info. 14-15 Sleep & Cardiovascular Disease 16 Kristin Castiglione, Editor [email protected] Like us on Facebook. 62nd Annual MHI National Conference Photos Redesigning New HeartPack ... s w e N l Nationa AFib-Stroke Education Initiative Mended Hearts recently received a national grant from Bristol-Myers-Squibb to implement an educational initiative on AFib and AFib-related stroke for chapters. This grant is a partnership with HeartCaring, a cardiovascular outreach program in hospitals. Together, Mended Hearts volunteer members and HeartCaring designated providers will work to increase awareness to action as consumers learn about atrial fibrillation (AFib) and the resulting increased risk of AFib related stroke. Fifty Mended Hearts chapters have been selected to participate in this initiative based on their active visiting programs. The Central Region has 6 chapters that will take part in this initiative: Chapter #11 in Louisville, KY-Baptist Health, Chapter #61 in Dayton, OH-Kettering Medical Center, Chapter #107 in Evansville, IN-Deaconess Gateway, Chapter #115 in Lexington, KY-Baptist Health, Chapter #350 in Noblesville, IN-Riverview Hospital and Chapter #383 in Indianapolis North, INCommunity Heart & Vascular Hospital. There will be three training conference calls in August on the AFib and Stroke Education Initiative. The dates of these calls are: Wednesday, August 20th at 4pm ET/3pm CT Monday, August 25th at 3pm ET/2pm CT Tuesday, August 26th at 7pm ET/6pm CT MHI is asking for at least one representative from each participating chapter to participate in one of these calls. To register for one of these calls, please sign-up HERE. This program will officially launch in September which is AFib National Awareness Month. Chapters are encouraged to hold an educational session on AFib and AFib-related stroke at a chapter meeting in the fall by asking a local physician or nurse to present during a chapter meeting. The new HeartPack will debut in January 2015. This next-generation Heartpack will be interactive and will serve as an organizational tool for both patients and caregivers. It will help them organize their paperwork, plan conversations with healthcare providers and assist with medication management. The National Office will be developing an app for smartphones and tablets that will mirror this interactivity. “In the News” Page You may or may not be aware that the Mended Hearts National web site now has an “In the News” page. This page shows recent Press Release information and Media Coverage articles on Mended Hearts. The link to this page can be found on the Mended Hearts Home page on the top right side of the screen next to the Search Button. Mended Little Hearts Update MLH is currently updating all of their materials provided in the “Little Heart Pack” along with the content of their Bravery Bag. This effort couldn’t have been done without the feedback from parents and families during a very emotionally draining time in their lives. MLH is also filming Leadership Training Videos to be used by new and existing group leaders. Once completed, these videos will be posted on the MLH web site for leaders to access. Conf. Presentations on Web Site For those of you not able to attend this year’s conference, the presentations from the educational sessions and CHD Symposium can now be found in the officer section of the National MHI web site. If you already haven’t done so, please take a moment and share this information with your members at your next chapter meeting. Chapter/Group Web Sites The National Office is currently developing individual chapter and group web sites that can be accessed from our main sites: mendedhearts.org and mendedlittlehearts.org. Visitors to these sites will soon be able to type in a zip code to find the nearest local chapter or group. Once the prototypes are complete, additional information will be shared with the chapter presidents and group coordinators so they can learn how to maintain and update their chapter sites. - Page 2 - Patient Advocacy Videos All Marketplace Items On Sale Mended Hearts, in conjunction with ACC, has created short informative videos to assist our members tp tell their story about heart disease to the press or local lawmakers. The Mended Hearts Patient Advocacy Training Videos are a perfect tool to help members share their stories effectively and with inspiration and to help increase awareness of the tremendous good Mended Hearts and Mended Little Hearts are doing nationwide. The link to the Patient Advocacy Videos can be found on the “Get Involved” page on the Mended Hearts National web site. All marketplace items are currently 50% off until inventory is depleted! This discount applies to current inventory ONLY - no rain checks! All discounts will be applied prior to charging your credit card. This offer excludes the 10% discount when you purchase ten or more of one item. Don’t let this opportunity pass you by! Conference Photos Available New Logos for MHI and MLH The Mended Hearts, Inc. recently introduced two new logos for both Mended Hearts and Mended Little Hearts. The red ribbon simultaneously celebrates and mends the heart. It is a symbol of passion, strength, action, and perseverance. An “official” press release announcing these logos was launched on August 6th. National will begin to rebrand all of our materials , including HeartPack, membership brochures, websites, social media and merchandise. In addition, National will be creating individual chapter and group logos. Once all logos have been designed, you will be able to download the National logos as well as the chapter/group logos from the officer web site. If you attended this year’s conference and would like to purchase photos taken at the event, please contact the conference photographer, Georgia Litson, [email protected]. Total print price is: 4x6 = $1.10, 5x7 = $2.51, 8x10 = $4.28 and 9x12 = $8.53. All orders include an $11 S & H fee. The deadline to order prints in Sept. 26, 2014. You can view the photos by clicking on the following links: Day 1 Photos Day 2 Photos Day 3 Photos Day 4 Photos Central Regional Connections Meeting Heartbeat Magazine - Summer ‘14 For those of you who have not received it yet, the Summer 2014 edition of Heartbeat Magazine should be arriving at your doorstep any day now. The feature article in this magazine discusses how Mended Hearts and Mended Little Hearts are embarking on an independent course for the first time in more than 19 years. Our very own Kentuckiana Chapter 11 and MLH of West Michigan group are both featured in the magazine. The Summer edition of the Heartbeat Magazine can be found on the Mended Hearts National web site. The next Central Regional Connections Meeting will be held in Dayton, OH on Saturday, October 25th. More details to follow. Please mark your calendars NOW. We hope to see representation there from each of our MHI chapters and MLH groups! - Page 3 - Since the MHN conference, one of our members Thumbs up to our MHI/MLH succeeded M e n d e d H e a r t s C e n t r a l R e gin igetting o n our chapter on line with a new Chapters/Groups! website, www.mendedheartschapter11.weebly.com and keeps our Facebook page updated. Other events coming up that we will participate in is our Inaugural Golf Scramble scheduled for Sept. 3rd, the AHA Heart Walk on Sept. 20th, and don't forget our Christmas Party. Let’s hear from our MHI chapters… Louisville, KY - Chapter #11 Kentuckiana Chapter #11 hit the road running in 2014. It has been a great year thus far, and I'm sure will continue through out the rest of the year. We have a wonderful group of individuals that work very hard to see our chapter succeed and in trying to get our message out to our area so we can support others. All three of our hospitals support us where they can. They provide snacks and drinks at our monthly meetings, which are the 3rd Monday of each month; they help identify speakers each month that provide interesting and current topics at our monthly meetings; and financially support the Chapter efforts to send members to the national conference each year. I am proud and honored to be the president of such a wonderful chapter. Sandy Larimore, Chapter President Raised funds for “National Day of Giving” at the Uptown Art Studio. Starting on February 20th, the Bullitt County Health Department, Mended Hearts Chapter, and many other organizations, hosted a "Healthy Hearts Wear Red Luncheon" for heart awareness month. Dr. William C Dillon, from Baptist Health Hospital (formerly Baptist East Hospital) gave the keynote speech to approximately 240 attendees. We raised $2,423 for the AHA Heart Walk. The Kentuckiana Chapter #11 held it's 40th Anniversary Dinner celebration at Kentucky One Health (formerly Jewish Hospital) with Dr. Mark Slaughter, Professor/Chief, Division of Thoracic & Cardiovascular Surgery, Kentucky One Health filling in for Dr. William DeVries, who was detained due to a snow storm on the east coast. 2013 Team Photo. Appreciation lunches were given by all three hospitals that Mended Hearts are accredited with in April. We volunteered and participated in AHA's "Go RED for Women Luncheon" which had approximately 1,000 attendees in May and we raised $261 for the "National Day of Giving" at the Uptown Art Studio (where you are instructed to paint a picture) in honor of Dr Harken's birthday. Chapter #11 had 12 members attend the 62nd MHN Education & Training conference in Indianapolis, IN, where Joyce and Richmond Marcy won the "Central Regional Visitor of the Year Award" and our Kentuckiana Chapter #11 received the "President's Cup Award." - Page 4 - In February, co-hosted a “Healthy Hearts Wear Red Luncheon” for heart awareness month. Cincinnati, OH - Chapter #35 Akron, OH - Chapter #59 Mended Hearts Chapter 35 was chartered in 1976 to serve the greater Cincinnati, Ohio and northern Kentucky region. As of July 2014, we serve four hospitals with accredited Mended Hearts Visitors. Our chapter has 56 members, 17 of these members are accredited visitors. We are always looking for more members and the opportunity to train more visitors who want to volunteer. Area hospitals, other than the four currently being served, are interested in our activities. We are, however, limited by the number of visitor volunteers we have at present. We recently got some publicity that was in our newspaper about Mended Hearts, Chapter #59, Huggy Pillows project. The newspaper contacted Our Accredited Visitor Coordinator, Richard Piersol , who currently is the only person from our chapter who is accredited to visit heart patients in SICU. It was a very good article that tells that Mended Hearts, Inc. was established to give help and encouragement to heart disease patients and their families. We were proud that the paper gave us such good publicity and we are proud of our Huggy Pillows that is our gift to heart patients. Three members of Chapter 35 attended the 2014 Mended Hearts Annual Education & Training Conference in Indianapolis. It was most enjoyable and informative. Sorry, our members took no pictures, but I know that we were included in some. We are starting work on our 2015 Heartalk Bulletin that is planned to be issued January 4, 2015. Current effort is to select chapter meeting places, dates and speakers. The Bulletin will be sent to all our members and will be included in the package to be given patients visited in the year 2015 or to their families. Frank Iden, Chapter President Zanesville, OH - Chapter 51 The volunteer awards banquet was held on April 24th. Some of their members reached milestones. Congratulations to: John Hann: 100 hours, Terry Tysinger: 100 hours, Patty Tysinger: 100 hours, Gene Murdock: 1,000 hours and Marilyn McHugh: 1,500 hours On May 28th the Zanesville Chapter was asked to take part in a North Pointe Fitness Institute seminar. They set up a table with some brochures, photo album, etc. to get the word out about their program. President Mark Hennessey attended the Heart Chase event and was able to give a talk about their Mended Hearts program to the group. The event raised $29,944! The Zanesville Chapter’s annual picnic was held on July 8th. It sounds like it should be quite fun! May/July “Bridge To The Heart” Newsletters The updates included in this section were either provided by the MHI Chapter Presidents and MLH Coordinators or taken from recent MHI chapter newsletters. If your chapter/group was not spotlighted in this newsletter edition, we hope to hear from you next time. For those chapters who publish newsletters, please continue to copy Jana Stewart and myself on your newsletters. Thank you! Dick Piersol and I wrote a letter that we passed out to all the doctors about our need for extra money to continue making the pillows and we got a good response from the hospital administrator who donated a $1,000 toward the pillows. Our meetings are every second Tuesday of the month at 1:00 p.m. Our Program Chairperson, Doris Patterson, is the one who gets speakers for our meetings. We have very good doctors from the hospital who volunteer to be our guest speakers and we also have nurses from different departments and physical therapists who volunteer. We have at least one or two speakers a year who are not in the medical field such as one who spoke on fire prevention and another speaker who warned us about scam artists. The guest speaker we are happy to have in September of this year is Conrad “Smokey” Everett, who is United States Secret Service, Special Agent in Charge, of the Cleveland Field Office. He spoke to our group several years ago and we will be anxious to have him again. We have our annual picnic which is in August that we enjoy. We bring our favorite covered dish, table service, etc. We also play bingo. This is a fun time of fellowship. We usually have gifts of not more than $5.00, and when they are all gone, we continue playing bingo and winners can take someone else’s prize. There’s no casualties – we still remain as friends. James E. Patterson, Chapter President To read the article in the Akron Beacon Journal about Richard Piersol and the Huggy Pillows Project, click on the button to the left. Read Article - Page 5 - Dayton, OH - Chapter #61 Bellefontaine, OH - Chapter #69 Our membership is continuing to grow. We had 43 active members at the end of 2013. In six months, our membership has grown to 60 active members, 23 of whom are accredited visitors. Five of these accredited visitors are now accredited in more than one hospital. We currently serve three hospitals in the Dayton area and are in the process of adding another to our list of partnering hospitals soon. The target for adding the fifth hospital is later this year. Their annual picnic was held on July 24th at Rutan Park in Bellefontaine. Everyone was asked to bring a “heart healthy” dish to share. It sounds like they had great food, games and lots of good fellowship! In regards to our community effort, we joined forces with the Centerville Americana Festival where on July 4th, eight of us manned a booth which allowed us to spread the word in our community about our chapter and MHI. The attendance at the festival was estimated to be between 75,000 and 100,000 people. We are going to need a better booth next year. In order to get to know all of the members of Wright Hearts Chapter #61 it was decided to cancel our August Chapter meeting in lieu of having a cookout for all of our members and their families. People are starting to find us through our web site as well as word of mouth. This indicates that our communications are starting to pay off. There were four leads from the web site and three were converted into multiple phone visits with some potential members. There was one referral from a volunteer department that was converted into both a pre-intervention and post-intervention visit. Thanks to help from Scott Eitman of Mended Hearts Chapter #138 we are starting to implement phase two of our communications improvements by integrating a database with our newsletter and web site along with a more user-friendly and “new and improved” look for our web site. Kelvin Fudge, Chapter President Wright Hearts members (plus a granddaughter of one of the members) at July 4th Americana Festival in Centerville, OH. Their newsletter editor, Louise Norris, won Honorable Mention for her newsletter at the convention. Congratulations Louise! There are two local Farmer’s Markets in or near Bellefontaine, the Logan County Farmer’s Market and the Farmer’s Market at Mary Rutan Hospital. Farmer’s Markets provide a large variety of fresh fruits, vegetables and other locally produced products. This is a great way find healthy foods, at reasonable prices. And best of all, you will be helping the local economy and local farmers as well. June/July “The Heart Beat” Newsletters Indianapolis, IN - Chapter #78 At this time, Chapter #78 is going through some changes, and we are trying to get back on track. We held our annual garage sale in June, and we are planning a raffle this fall. We are currently trying to raise money for our chapter and focusing on getting and retaining members. On July 4th, members and friends of Chapter #78 attended an Indianapolis Indians Baseball Game . This is an annual trip we do together as a chapter. Attendees sat in a good reserved section at the Indians ballgame and afterwards enjoyed watching fireworks at the stadium as well as those of downtown Indianapolis. Pamela Hudson, Chapter President Evansville, IN - Chapter #107 We have good news to report, 4 members from our chapter; Jana Stewart, Tom Southwell, and Larry & Madonna Preske attended the National Mended Hearts Conference. It was held in Indianapolis this year. This is the first time in a long time that Chapter 107 was represented by more than one member. We had a fundraiser of sorts for the Day of Giving National Project and raised close to $250 all total for Dr. Harken's birthday celebration. Our visiting program is going well and our visitors are keeping busy even though it's summer time. Be sure to go to our chapter's website at www.mendedhearts107.org and also visit our Facebook page at www.facebook.com/MendedHeartsEvansvilleIndiana. Jana Stewart, Chapter President - Page 6 - Lexington, KY - Chapter #115 Lima, OH - Chapter #111 Chapter 111 had a continuing string of interesting and motivating speakers over the course of our September to June “Year”. September, 2013 began with David Faulkner, a Registered Clinical Exercise Physiologist, who talked about what exercise program we should/could maintain after completing the hospital based Cardiac Therapy Program. October brought speaker Sherri Wissman from the OSU Transplant Center, speaking on Ventricular Support Devices – Bridge to Transplant. We also had a local guest talk about his experience with a ventricular support device and his subsequent heart transplant. For November, we had as our speaker Dr. Anthony Pothoulakis, MD, a cardiologist associated with West Central OH Cardiology Inc. His presentation was on “Cardiometabolic Disease in the Era of Obesity Epidemic” In December we had our traditional Christmas Party Meeting at a favorite local restaurant, The Old Barn Out Back, and after dining, we were entertained by a local singing group. Our January, 2014 meeting was cancelled due to snow and ice! In February, Mother Nature again prevented us from having a meeting. Finally in March, the skies were clear and we had Dr. Sam Rahman, MD, talk about heart arrhythmia and atrial fibrillation. Dr. Rahman is an interventional cardiologist. In April, we had Dr. J.Franklin Oaks, who specializes in vascular surgery, speak about PVD, Peripheral Vascular Disease. In May, Jim Reber, former CEO of St. Rita’s Hospital, and Andee Henson, a local health insurance sales specialist, presented the topic of Dealing with the Healthcare Insurance System. In June, we had our annual spring “picnic”, again at The Old Barn, and were informed about The Mended Little Hearts by a family team of Hollee and Glenn Stanton, along with Gabriel and Grayson. We are now making plans to start up again in September with many more excellent speakers and programs. Larry Hicks, Chapter President Bluegrass Chapter #115, Lexington was chartered February 28, 1981. 46 individuals signed the Charter petition. At that time, memberships were classified as “Active” (heart patient) or Associate (spouses and other interested persons). There were 19 Active and 27 Associate members. We visit in the three local heart hospitals – Baptist Health Lexington, St. Joseph, and the University of Kentucky Chandler Medical Center. Baptist Health Lexington was nominated for and selected Central Region Hospital of the Year in 2013 and 2014. All of our accredited visitors are members of the volunteer organization in the hospital where they visit. Many of these also have other volunteer assignments. Our efforts have been recognized nationally by The Mended Hearts, Inc. In 1994 and 2014, our Chapter was awarded the President’s Cup. In 1995, 1997, and 2008 we received the President’s Cup RunnerUp Award. In 2014, our newsletter, The Pacer, received the national Newsletter of the Year award. Alice Slucher had been the editor for 25 years, and is now retired. She had also been Central Region Newsletter Chair. Four of our members, Jean Richardson, Francis Carpenter Jack Ping, and Becky Witt have served as Assistant Regional Director in the Central Region. Becky Witt was MC of the 2008 Convention in Orlando, and is currently serving as Assistant Regional Director. She is also the Central Region’s member of the National Nominating Committee. We have been well-represented at most of the annual Conventions for the last 20 years. Francis Carpenter, Chapter President What is the best type of exercise for heart health? Although physical activity is key to good heart health, there is no single exercise that’s best for everyone. Most adults should get at least 2 hours and 30 minutes of aerobic activity a week and engage in strength training activities at least twice a week. Aerobic exercise increases your heart rate over an extended period of time and includes activities like walking, swimming or biking. Strength training helps build muscle and includes activities like lifting weights or doing pushups. Together, aerobic exercise and strength training can boost heart health and promote a healthy weight. - Page 7 - Cleveland, OH - Chapter #138 Summer is half over and the weather in Cleveland has been beautiful this year. With the help of Stacy Roll, our website has been refreshed with a new look. Stacy, the daughter of a heart patient, reached out and volunteered to assist with design needs. She made MendedHearts138.org pop up on our screens faster while displaying more information on the home page. We look forward to additional design help with other projects in the future. At the National Convention, Scott Eitman presented on the topic of Inspiring Hope via the Internet. His seminar shared the tools he uses to communicate via the internet. The tools include the website, email and database tools. Just as important are the tools that National has made available. Primarily this included the Heart Disease Support Community Inspire which can be found by visiting MendedHearts.org Eitman used his seminar to roll out the new chapter design. In addition, he was given the honor of showing off a test site National is developing. The new site will create a web presence for those chapters which do not have one now. This will be similar to shopping online at any number of big box stores which after a zip code is entered, take you to the closest store. In our case, it will assist in getting to the closest chapter. Starting in May, we began a test to hopefully inspire more people to attend our main monthly program. We are now providing dinner and saw larger numbers at the June program. Was it Dinner or the speaker, the jury is still out. Assuming this is the success we expect, we will be rolling it out to all programs. Eventually we will reach out to sponsors to help to ease the costs. We take the months of July and August off in terms of our typical programs. However, on August 3rd, Scott Eitman is hosting our annual picnic at his house. If you are in the area, please stop by. Scott Eitman, Chapter President Farmington Hills, MI - Chapter #291 Not much is going on in our very small group of 15 participants. We hold monthly meetings at Botsford Hospital except when weather or storms do not permit it. I am the President , treasurer, and set up the guest speakers to come and talk. I have two accredited visitors and one who is almost ready to graduate. They have sporadic times and dates they come to the hospital depending on weather, illness or vacations. We had our July meeting at a member’s house for a backyard garden party this month. Lynn Sackett-Hodge, Chapter President Chapter #291 celebrating their 15 years together at Botsford Hospital in Farmington Hills, MI. Springfield, OH - Chapter #342 When I assumed our chapter in August 2012, we had 9 members attending our meetings. Currently, we have at least 25 members attending meetings, and membership has grown to 42-44 people. I have two members who perform meeting phone reminders. I find this is more personal than a postcard reminder. I also send personal meeting invitations to people who have recently been discharged from Springfield Regional Medical Center following a heart incident. We have an active visitation program here at this hospital that I’m very proud of. Our chapter recently participated in the Mended Hearts National Day of Giving by raising $135 for this event. We have had some very informative speakers at our recent meetings. In March, Ryan Lippe was our featured speaker. He is a consumer educatorconsumer protection from the office of Attorney General Mike Dewine. He provided an excellent presentation on signs of identity theft and prevention tips. The presentation was free; approximately an hour long and he provided resources. If other Ohio chapters are interested in finding out more about how to schedule a speaker on consumer protection issues, contact Ohio Attorney General Mike Dewine’s office at www.ohioattorneygeneral.gov or call 800-282-0515. In May, Sgt. Ralph Underwood from the Clark County Sheriff’s Office was our guest speaker. He explained the medicine “drop-off” programs available to Clark County residents. The goal is to encourage everyone to empty their medicine cabinets of expired or unwanted prescription medications. The Ohio Attorney General’s office and the Clark County Coroner’s Office have recognized prescription drug overdoses as one of the leading causes of death in Ohio. Carol Haytas, Chapter President - Page 8 - for the exciting work our families are doing! What’s going on with our MLH groups: MLH of Southwestern, PA Hello! Here is a little info about what the MLH of Southwestern, PA has been doing! Each month, we take 25 Care Bags as well as food and pantry items for Children's Hospital in Pittsburgh. We have just recently started dropping off bags and pantry items to the Children's Home in Pittsburgh as well. We are really excited about that! We had an amazing team show up to represent MLH of SWPA at the Pittsburgh Congenital Heart Walk. Along with the many other groups and walkers, the total raised from the walk was over $95,000! The chapter president of the Children's Heart Foundation summed it up perfectly from the walk...she said "BE AFRAID CHD...BE VERY AFRAID!" The Pittsburgh Pirates generously donated tickets to two games this summer that our members and families could attend. Both were great events to talk with other families. We are planning an educational meeting with CPR training. We are also busy working on our Basket Bash fundraiser, which occurs in October. Beth McElhaney, Program Chair MLH of West Michigan Mended Little Hearts of West Michigan has had a very busy and exciting spring and start to the summer. In April, we had an adults’ dinner out where parents of children with heart defects and adults with heart defects had an opportunity to meet and connect. In May, we toured the AeroMed hangar at the Gerald R. Ford Airport. AeroMed is the helicopter program that transports the most critical patients in West Michigan to Helen DeVos Children’s Hospital. An airport fire truck and the Helen DeVos Children’s Hospital Neonatal Ambulance were also on-site for our families to check out. We had a great turnout and everyone loved sitting in the helicopter, climbing through the ambulance and talking to the firefighters and medical staff. We had three coordinators attend the national convention in June. Mended Little Hearts of West Michigan received the Runner Up award for Group Excellence. We are very honored to be recognized In June, we implemented a new partnership with Hearts of Hope Southeast Michigan. Mended Little Hearts and Hearts of Hope delivered prenatal packs to the congenital heart centers at C.S. Mott Children’s Hospital and Helen DeVos Children’s Hospital to be distributed to families expecting a baby with a heart defect. We are happy to report that nearly all of the new heart families in Michigan will receive helpful information about what to expect and where to turn for support. Jennifer Dougherty, Co-contact Visiting the AeroMed Hanger at the Gerald R. Ford Airport in May. This little guy couldn’t be happier! MLH of Cincinnati, OH Mended Little Hearts of Cincinnati has experienced tremendous growth in it's 4 years! In the last 2 years our chapter has taken on expanded leadership and nearly two dozen new members. Under the newly expanded leadership of Chair Lisa Butler, Co-Chair Leslie Sams, Fundraising Coordinator Liz Schurrer our chapter now has regular meetings at Cincinnati Children's and an adult/teen groupSurviving CHD under the leadership of Danielle Fritsche. We continue to make exciting connections with Cincinnati Children’s Hospital Medical Center and patients. The chapter is now planning our first official picnic this year, as well as fall and winter member events! Care packages are reaching patients and letting them know that we are here to support them on this unexpected and at times scary journey. Our chapter was honored to be a part of Advocacy Day in Washington D.C. in February of this year. During this event we were asking for $7 Million for research, data and surveillance for CHD's! We hope that sending a message to our nation's leadership will keep CHD's in the national spotlight. Meeting with Senators and Representatives and sharing our story was a meaningful experience that hopefully had a lasting impact that will benefit many families and patients. The future is looking bright on both a local and national level and we are thrilled to be a part of it! Lisa Butler, Program Chair - Page 9 - July 3, 2014 Press Release Mended Hearts Showcase Cardiac Education at Annual Conference DALLAS, TX — At the 62nd Annual Education and Training Conference, Gus Littlefield, President, recognized Mended Hearts members, volunteers, and partners during the Annual Awards Banquet. “We have so much to be proud of, as the largest and oldest cardiac peer-to-peer support organization in the United States,” Littlefield told the audience at the annual event that brings together hundreds of members, cardiac and pharmaceutical organizations and leaders in medical advances for cardiac disease and congenital heart defects to recognize their contributions. “Those recognized today are crucial components of what our chapters, hospitals and partner organizations contribute to help provide support to heart disease patients nationwide. We are proud to state that we have nearly 4,000 trained accredited visitors who conduct nearly a quarter of a million visits to patients, caregivers and families each year.” Littlefield asked the audience to continue to focus on their strengths of providing personal interactions to help support others, but also to extend themselves past their traditional model of support and begin to include more types of heart disease patients. These may include: Latino populations, where heart disease is responsible for nearly 30 percent of deaths, African American men, who are 30 percent more likely to die of heart disease as compared to non-Hispanic white men, At-risk populations, such as diabetics, smokers, those who are obese and others with risk factors for heart disease are important sub audiences, and Encourage heart patients of all types to participate in cardiac rehabilitation, and continue for a lifetime for optimal heart health benefits. With volunteers at the core of the services Mended Hearts provides, Littlefield told the audience how he continues to recall when he was first visited in the hospital. “That visit over 15 years ago made such a profound impact on me that I continue to give back to others who are experiencing the impacts of heart disease on their health”. The annual Education and Training Conference focuses on furthering education for its members to ensure increased awareness of cardiac disease and congenital heart defects. The following award winners were announced: Presidents Cup Winner: 1-39 members Kentuckiana Chapter 11, Louisville, KY Mary M. Amato Education Award Cristy Davaloz, Bachelor’s in Kinesiology, University of Arkansas, Fayetteville, AR Presidents Cup Winner: 40-99 members Bluegrass Chapter 115, Lexington, KY Newsletter, Monthly Award of Excellence Alice Slucher, Editor of “The Pacer” Lexington, KY, Chapter 115 Presidents Cup Winner: 100+ members Cookeville Chapter 127, Cookeville, TN Newsletter, Bi-Monthly Award of Excellence Debbie Pollock, Editor of “The Mended Heartbeat” The Woodlands, TX, Chapter 341 Hospital of the Year Cookeville Hospital, Cookeville, TN Mended Heart of the Year Lynn Frierson, Johnson City, TN, Chapter 259 Internet Visitor of the Year Rick Fisher, Newport News, VA, Chapter 119 Sydney & Helen Shuman Nurse Recognition Susan Murphy, R.N., Mended Hearts of Gastonia, NC, Chapter 379 Carol Loe, R.N., Plain O’ Heart Mended Hearts, Plano, TX, Chapter 142 Newsletter, Quarterly Award of Excellence Kristin Castiglione, Editor of “Heart Notes” Dayton, OH, Chapter 61 Mended Little Hearts Group Excellence Award Mended Little Hearts of Phoenix, Phoenix, AZ - Page 10 - Regional Accredited Visitor Excellence Award Rich and Joyce Marcy, Louisville, KY - Chapter #11 Lawrence Preske, Evansville, IN - Chapter #107 Robert Slucher, Lexington, KY - Chapter #115 Congratulations to all of our National and Regional Award winners! Regional Hospital of the Year Award Community Heart and Vascular Hospital in Indianapolis, IN Baptist Health in Lexington, KY Regional Mended Heart of the Year Award Amy Thomas, RN - Community Heart and Vascular Hospital Regional Visiting Chair Excellence Award Arthur T. Southwell, Evansville, IN - Chapter #107 Newsletter - Monthly Award of Excellence Scott Eitman, Editor of “The Beat Goes On” from Cleveland, OH Bonnie Weck, Editor of “Heart to Heart” from Louisville, KY Newsletter - Bi-Monthly Award of Excellence Louise Norris, Editor of “The Heartbeat” from Bellefontaine, OH Newsletter - Quarterly Award of Excellence Central Regional Awards! Kristin Castiglione, Editor of “Heart Notes” from Dayton, OH Newsletter - Quarterly Honorable Mention Christine Morris, Editor of “Mending Hearts” from Columbus, OH Rick & Joyce Marcy (Chapter #11) Regional Accredited Visitor Excellence Award! NATIONAL AWARD: Chapter #11 - President’s Cup Winner (1-39 Members)! MLH of West Michigan Runner Up Award for Group Excellence! - Page 11 - This article was presented by Jodi Lemacks at the opening dinner for the Mended Little Hearts Leadership Training session in Indianapolis. Why Mended Little Hearts Is Here WE ARE HERE...CHD SUPPORT We are here because after a diagnosis, in your darkest hours, when you have pain in the pit of your stomach and you feel like your heart may break open, there is immeasurable power in having someone take your hand, either virtually or in person, and say, “Hey, you don’t have to walk this journey alone. I will be right here by your side.” And for the first time since you heard those horrible words about your beautiful child’s heart, you have a glimmer of hope, and you think just maybe you can do this. We are here because when you are sitting in the hospital day after day, hoping that your child survives, and you get a care bag (or our new Bravery Bag) full of items that are perfect for helping you through your hospital stay, you understand that others have walked this path and care about you. You feel comforted, and again, you know you are not alone. You realize that although we can’t give you what you really need, a healthy child without a heart defect, we can give you things to make life just a little easier for you and your family. We are here because once your child has gone through the initial surgery, heart procedure or hospital stay, you get home and think, “Now what?” You feel scared and confused and have more questions than answers. You wonder if you are doing anything right and if your child is going to be okay. What if you make a mistake? You find that having someone, or even a whole group of people, who continue to support you, to answer questions, to provide information and to connect you with the resources you need gives you confidence and courage so you are better able to care for your child. We are here because the answer, “Really, I didn’t know that,” to the question, “Did you know that congenital heart defects are the most common birth defect in the U.S.” is simply unacceptable - especially when there is still not a cure for congenital heart defects and our kids need one. We know that many of the answers we do have for our kids - the surgeries and procedures - are temporary, and we live our lives hoping and praying that the technology and/or treatment will come before our kids need them. We know the importance of raising awareness in our communities and nationally. We advocated on issues that affect our kids. And we make a difference - even if it is sometimes just one person at a time. Because we are here, you have confidence that we will keep raising awareness until there is a cure. We are here in honor and memory of all of the beautiful children and adults who have lost their battle to congenital heart disease. We work for better quality and new treatment options to say, “This disease will not take any more of our children! We have had enough!” We are game changers who won’t stop until CHD is no more.” Mostly though, we are here because helping others not only helps them, but it helps us as well. When we are able to take a painful experience and use what we learned to give back to others, we heal. We show the world clearly that although our child has congenital heart disease, it did not defeat us, and it cannot define us. We are stronger than we knew, and our service to others makes the world a better place. Personally, I am very grateful Mended Little Hearts is here for us when we need it. Thank you all for your time, dedication and service. You all help to improve the lives of families throughout the nation, and while you may not hear from the families you serve often enough, know that what you do makes a difference. - Page 12 - Is it safe for patients with congenital heart disease to exercise? For most patients with congenital heart disease, it’s not only safe but important to stay physically active. Physical activity helps improve heart health and reduces risk for high blood pressure, diabetes, obesity, depression, cancer and heart disease. Patients with congenital heart disease should work closely with their providers to create a physical activity program that is safe for them. By Pete Castiglione Have you ever wondered how many calories you burned during an exercise or for the whole day? Well, I often have, and I recently found a great way to see that information every day through an activity tracker. These wonderful devices come in many shapes and sizes – wrist watch, wrist band, and clip-on. Some devices also capture sleep patterns, heart rate, and skin temperature. There are many different makes and models on the market and the number are growing exponentially with their popularity. We will look at five of the most popular devices in the table below. Each of the devices will track steps taken and use your height and weight to calculate calories burned using their formula. Some track other exercise as well using sensors or manual input of activity, level of effort and duration of that effort. Sleep is tracked by movement during evening hours. By adding the food that is consumed, the tracker applications can reflect calories consumed vs those burned. Some trackers have a display screen and others just indicator lights. A couple have a vibration alarm to wake you or let you know that you have been inactive too long. The way that the data is shown varies drastically based on the device and software. All of the activity trackers will feed the raw data from the tracker to a smart phone, and/or computer where it is reflected in reports and tables. This synchronization is done automatically or at your prompt depending on the activity tracker. At this time, Fitbit has the best dashboard screen to display your results on your computer screen. But all of them display adequate results to track your improvement. Many people that use the activity trackers regularly to track their activities find that they continue to strive to improve to reach their goals resulting in a healthier life style. No one activity tracker is best for everyone. Each person needs to look at what is available and match them to their personal activities and needs. Fitbit One Fitbit Flex Jawbone Up 24 Nike Fuelband SE Garmin Vivofit Retail Price $99.99 $99.95 $149.99 $99.95 $129.99 Type Wrist Band Clip-on Wrist Band Wrist Band Wrist Band Compatibility Windows, Mac, Android, iOS Windows, Mac, Android, iOS Android, iOS Windows, Mac, Android, iOS Windows, Mac, Android, iOS Battery Life 5-7 Days 7-10 Days 5-7 Days 5-7 Days Watch Battery – over 1 year Sleep Monitor Yes Yes Yes Yes Yes Heart Monitor No No No No Heart Rate Monitor Compatible Data on tracker Indicator LED Screen Indicator LED Screen Screen - Page 13 - Central Region RD and ARDs RD: ARDS: Jana Stewart - Chapter #107 (812) 963-6019 [email protected] Bruce Norris - Chapter #69 (937) 919-7213 [email protected] Chapter Assignments: #51, #61, #69, #109, #111, #230, #291, #342, #371 Jo Ann Kats - Chapter #11 (502) 245-7785 [email protected] Chapter Assignments: #11, #219, #366 Becky Witt - Chapter #115 (859)-272-8213 [email protected] Chapter Assignments: #35, #59, #87, #115, #138, #170 Jana Stewart - Chapter #107 (812) 963-6019 [email protected] Chapter Assignments: #107, #280 The Central Region consists of five+ states: Indiana, Kentucky, Michigan, Ohio, West Virginia and the western half of Pennsylvania. There are currently 25 chapters and 3 Satellite chapters in the Mended Hearts Central Region as well as 9 Mended Little Hearts groups. Linda Mason - Chapter #350 (317) 407-8300 [email protected] Chapter Assignments: #78, #236, #268, #350, #383 Mended Hearts Central Region Chapter Presidents Louisville, KY - Chapter #11 President, Sandy Larimore (502) 428-6621 [email protected] Mansfield, OH - Chapter #109 President, Gabe DeSantis (419) 884-1696 [email protected] Cincinnati, OH - Chapter #35 President, Frank Iden (513) 793-2930 [email protected] Lima, OH - Chapter #111 President, Larry Hicks (419) 999-5414 [email protected] Zanesville, OH - Chapter #51 President, Tony Maniaci (740) 454-8001 [email protected] Lexington, KY - Chapter #115 President, Francis Carpenter (859) 873-8796 [email protected] Akron, OH - Chapter #59 President, James Patterson (330) 334-1236 [email protected] Cleveland, OH - Chapter #138 President, Scott Eitman (216) 372-1116 [email protected] Dayton, OH - Chapter #61 President, Kelvin Fudge (937) 790-0671 [email protected] Sistersville, WV - Chapter #170 Bellefontaine, OH - Chapter #69 President, James Wilgus (937) 599-6545 [email protected] Bowling Green, KY - Chapter #219 President, Dr. Alton Little (270) 842-2338 [email protected] Indianapolis, IN - Chapter #78 President, Pamela Hudson (317) 442-7393 [email protected] Pontiac, MI - Chapter #230 President, Shirley Kell (248) 623-1168 [email protected] Steubenville, OH - Chapter #87 President, James Thompson (740) 535-1914 [email protected] Terre Haute, IN - Chapter #236 President (Acting), Venita Gastineau (812) 235-7586 Evansville, IN - Chapter #107 President, Jana Stewart (812) 963-6019 [email protected] Munster, IN - Chapter #268 President, Nancy Govert (219) 374-2367 [email protected] - Page 14 - Wheeling WV - Chapter #280 President, Mary Maguire (304) 280-5221 [email protected] Farmington Hills, MI - Chapter #291 President, Lynn Sacket-Hodge (248) 471-8740 [email protected] Springfield, OH - Chapter #342 President, Carol Haytas (937) 325-3198 [email protected] * Noblesville, IN - Chapter #350 President, Stan Gurka (317) 877-3030 [email protected] New Albany, IN - Chapter #366 President, Carl Sinkhorn (812) 243-4718 [email protected] Columbus, OH - Chapter #371 President, Jeff Davidson (614) 580-1561 [email protected] Indianapolis, IN - Chapter #383 President, Bennie Stepp (317) 621-8631 [email protected] Mended Hearts Central Region Satellites Cleveland, OH - Chapter #138 Elyria Memorial Hospital Contact: Bill Crowell 206 Harvard Ave. Elyria, OH 44035 440-323-7770 Munster, IN - Chapter #268 Saint Mary Medical Center Contact: Cathy Cofer-Hines 1500 S. Lake Park Ave. Hobart, IN 46342 219-947-6086 [email protected] Lake West Hospital Contact: Katherine Fagan 9571 Tipperary Lane Mentor, OH 44060 440-639-9418 Mended Little Hearts Central Region Groups INDIANA PENNSYLVANIA Evansville, IN Mended Little Hearts of Evansville [email protected] www.mendedlittleheartsevv.org Contact: Julie Stucki 812-499-4010 Youngwood, PA Mended Little Hearts of Southwestern, PA [email protected] * www.swpa.mendedlittlehearts.net * Contact: Beth McElhaney * 724-858-6314 * Indianapolis, IN Mended Little Hearts of Indianapolis [email protected] * Contact: Dana White 317-445-2575 MICHIGAN KENTUCKY Bowling Green, KY Mended Little Hearts of Bowling Green [email protected] Contact: Lara Barnhouse 270-392-4839 Grand Rapids, MI Mended Little Hearts of West Michigan [email protected] www.mlhmi.org * Contact: Jenna Wood 616-232-2008 Contact: Jennifer Dougherty 616-644-6529 Cleveland, OH Mended Little Hearts of Cleveland [email protected] Contact: Margaret Andorf 440-725-9222 Columbus, OH Mended Little Hearts of Columbus [email protected] www.mlhcolumbus.blogspot.com Contact: Riann Taylor 614-565-4689 Dayton, OH Mended Little Hearts of Dayton [email protected] Contact: Galen Gingerich 937-698-7575 OHIO Cincinnati, OH Mended Little Hearts of Cincinnati [email protected] * Contact: Lisa Butler 513-518-3621 Contact: Leslie Sams * 859-559-5580 * Please look at your contact information and let Jana Stewart and the Newsletter Editor know if there are any changes that need to be made. There have been a few changes made since Jana published the latest version of the 2014 Convention Booklet on 7/23/14. These changes are identified with an * by the line change. - Page 15 - Nonprofit Organization U.S. Postage Paid Mended Hearts - Central Region RD: Jana Stewart 8040 Big Cynthiana Road Evansville, IN 47720 Evansville, IN 47708 Permit No. 2095 IMPORTANT: DATED MATERIAL Sleep and Cardiovascular Disease Inadequate sleep is not just an annoying fact of life. Studies have shown it may raise your risk of cardiovascular disease. In fact, the effect of poor sleep on cardiovascular disease is a two-way street. Inadequate sleep appears to contribute to cardiovascular disease. And cardiovascular disease may disturb your sleep. This could become an exhausting, vicious cycle if you ignore your sleep problems. Poor sleep has been linked to high blood pressure, atherosclerosis (clogging or hardening of the arteries), heart failure, heart attack, stroke, diabetes, and obesity. Poor sleep appears to increase substances in your body, such as c-reactive protein, that indicate inflammation is a problem. So, inflammation, which is how the body responds to injury, infection or disease, may be part of the reason poor sleep affects your cardiovascular system. Poor sleep also causes the body to produce more stress hormones, which may contribute to cardiovascular disease. On the other hand, sometimes symptoms related to cardiovascular disease can be a cause of poor sleep. Angina (chest pain), arrhythmias (abnormal heart rhythms), sleep apnea (a series of breathing pauses during sleep that stress your cardiovascular system), and fluid build-up in the lungs due to heart failure may all disrupt sleep. The good news is there are steps you can take to improve your sleep. Always talk to your doctor about your sleep problems, however minor you think they might be. There may be lifestyle changes or treatments that can help you sleep better. - Page 16 -