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GO GOLF KAUA‘I LAUNCHES NEW WEBSITE

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Kaua‘i, Hawai‘i (May 2, 2019) – Go Golf Kaua‘i, a collection of Kaua‘i’s top daily-fee and resort golf courses, has launched a new and improved website at www.gogolfkauai.com. The new website makes it easy for golfers to book tee times, plan group outings, learn more about stay and play packages, and get the latest news and information about golf on Kaua‘i. On gogolfkauai.com, golfers are booking tee times directly with the Kaua‘i golf properties with live inventory displaying the courses best available rates. The five Kaua‘i golf courses represented on the website are The Ocean Course at Hokuala, Poipu Bay Golf Course, Princeville Makai Golf Club, Puakea Golf Course and Wailua Golf Course.

“We’re excited to debut the new Go Golf Kaua‘i website,” said Sue Kanoho, Executive Director of the Kaua‘i Visitors Bureau. “Kaua‘i is a top destination for golfers from around the world. The new website is easy to navigate, beautiful to view with stunning photos, and simple for golfers to plan and reserve their Kaua‘i golf vacations.”

Nicknamed the Garden Isle for its lush tropical foliage, waterfalls and ever-present Pacific Ocean scenery, Kaua‘i is perennially recognized for its beaches, award-winning courses, ideal playing weather and stunning natural beauty. Five Kaua‘i golf courses were recently named “Best of Hawaii” by Golf Advisor. In a Top 20 listing of the best courses in Hawai‘i, Golf Advisor’s community of golfers voted Princeville Makai Golf Club No. 2, Poipu Bay Golf Course No. 7, Puakea Golf Course No. 13, The Ocean Course at Hokuala No. 17, and Wailua Golf Course No. 19. All five courses exemplify the stunning views and exceptional golf found on the island.

For more information on Kaua‘i golf, visit www.gogolfkauai.com.

from Golf News Wire http://bit.ly/2Y40c3Q

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Life after stroke: Rebecca’s fierce determination

PHOTOS COURTESY OF THE GOLD FAMILY

Last July, Rebecca Gold’s parents, Karen and Adam, had just dropped her off at sleepaway camp in Pennsylvania. They hadn’t even completed the drive back to Connecticut when they received a frightening call: Their 12-year-old daughter had collapsed to the floor, vomiting and unable to move her limbs. She was now at a nearby children’s hospital in Delaware. After packing overnight bags and picking up their son, Jeremy, the couple turned around and headed back to meet Rebecca. “We didn’t realize it then, but we were leaving our home in Connecticut for good,” says Karen.

Looking for long-term care

In Delaware, Rebecca was diagnosed with a rare form of vasculitis, or inflammation of the blood vessels, which doctors determined had triggered not one but three strokes. Her speech, as well as her right arm and leg, were affected as a result. As they worked to contain the vasculitis with steroids and other medications, Karen and Adam began researching long-term care options closer to home.

“We had a great experience with the doctors in Delaware, but her case was so unusual,” Karen remembers. After researching their options, they determined that their best choice was Dr. Michael Rivkin, director of the Stroke and Cerebrovascular Center at Boston Children’s Hospital. She admits that they were a bit hesitant: “We knew that Rebecca would receive top notch medical care, but we wanted to be sure she would receive the same level of personal attention that she received in Delaware. We were worried that Rebecca might be treated like a case study at an academic medical center,” she explains.

Rebecca, her brother, Jeremy, and their dog.

Brain and heart

Those concerns were put to rest upon meeting Dr. Rivkin. “He was so kind,” says Karen. “The whole team knew how make us feel comfortable as soon as we met them.”

In Boston, Rebecca’s clinicians — including neurologist Dr. Miya Bernson-Leung and rheumatologist Dr. Robert Sundel created a treatment plan to control the vasculitis, prevent future strokes and enhance her recovery. The success of Rebecca’s care plan, along with her physicians’ knowledge of her rare condition, inspired the family to make Boston not just their destination for health care, but also their home. “We decided it was natural to relocate to Massachusetts,” says Karen. “We wanted to be closer to her care.”

Now, the Golds see Dr. Bernson-Leung most often. “She’s brilliant, but also extremely warm and compassionate — a wonderful combination of brain and heart,” says Karen, who appreciates the clinician’s patience. “The humanity of both Dr. Bernson-Leung and Dr. Rivkin has helped us become better caretakers for our daughter.” 

New possibilities

Today, Rebecca — once a winning tennis player, black-diamond skier, pianist, violist and member of her school debate team — is still is adjusting to life after a stroke. “She has her bad days and doesn’t always give herself the credit she deserves,” says Karen. “But she’s already come so far.”

Indeed, Rebecca’s speech has improved dramatically.  In addition to her structured work with her speech therapist, she enjoys singing along to her favorite songs and reciting poems she’s memorized. And although Rebecca still wears a brace to protect her ankle, she walks over a mile without a problem. She’s also about to start playing viola again, with the help of a very gifted and generous violinist who also plays adaptively.

“The stroke may prove to have closed some doors for Rebecca,” says Karen. “But her improving health, fierce determination and the amazing people that her new reality keeps presenting to her are opening many happy new possibilities as well.”

Learn about the Stroke and Cerebrovascular Center and register for our second annual Family Day event on May 11, 2019.

The post Life after stroke: Rebecca’s fierce determination appeared first on Thriving Blog.

from Thriving Blog https://on.bchil.org/2LlHGSW

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Golf Industry Comes Together for 12th Annual National Golf Day

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Golf Industry Comes Together for 12th Annual National Golf Day, Bringing Stories of Positive Economic and Community Impact to Washington D.C. Record-High 244 Meetings with Members of Congress from 41 States Showcase the Game’s Value & Importance Across U.S. (WASHINGTON, D.C.) – Golf industry leaders participated in a record-high 244 meetings with members of Congress representing 41 states to discuss the game’s economic, social and environmental contributions to the United States during today’s 12th annual National Golf Day on Capitol Hill. Coordinated by a coalition of the game’s leading associations and industry partners under the banner of WE ARE GOLF, National Golf Day brings together more than 300 industry leaders from across the U.S. to support the game’s $84.1 billion economy, nearly $4 billion annual charitable impact, close to 15,000 diverse businesses and two million jobs impacted. “The game of golf is growing and evolving, and it is important that we come together collectively in Washington to share stories of impact the game is having on business and communities across the United States,” said Greg McLaughlin, CEO of World Golf Foundation, the organization that coordinates WE ARE GOLF activities. “From athletes from every corner of the world competing each week on the PGA TOUR and LPGA, to global companies investing billions of dollars in and around the sport, to healthy participation in traditional and emerging ways, the game of golf is a strong and vibrant part of American culture.” “We are here to educate our elected officials that the golf industry is made up of many small businesses that contribute to our national economy,” said Jay Karen, CEO of National Golf Course Owners Association and Chair of the WE ARE GOLF Board. “The importance of fair and good taxation policies is paramount to the success of our businesses.” “Sports have always been an important part of American culture, and in my hometown of Augusta, Georgia, golf is at the heart of our town’s traditions and identity,” said Rep. Rick Allen (R-GA). “On National Golf Day, we renew our commitment to ensure Americans not only play the game for decades to come, but also ensure golf’s economic, social and charitable impacts are effectively communicated and protected.” “So many golf courses in the US, including courses in my district, are public facilities operating as small, locally owned businesses,” said Rep. Bill Keating (D-MA). “National Golf Day highlights the industry’s importance to American society, including business, recreation, hospitality and tourism. Anything that brings people together is great, and golf brings people together.” On Tuesday, April 30, the third-annual Community Service Project featured over 200 participants demonstrating the industry’s commitment to collaboration on beautifying and preserving historical landmarks between the Lincoln Memorial and Washington Monument. Golf industry leaders, coordinated by Golf Course Superintendents Association of America, volunteered to lay sod, rake, edge, overseed, aerate, mow, mulch, brush walkways and spruce gravel pathways across 17 projects along the National Mall. The four hours of work saved the U.S. National Park Service nearly four months of labor costs. Numerous golf courses and industry businesses celebrated and recognized National Golf Day in their own communities through activities and special offers. Included was Topgolf, which offered complimentary group golf instruction lessons at 50 locations across the U.S. To join the social media conversation, use #NationalGolfDay and tag @wearegolf on Facebook, Twitter and Instagram to support the industry as well as share why golf is more than a game to you. For more information on National Golf Day, click here. About World Golf Foundation The mission of the World Golf Foundation is to unite the golf industry in support of initiatives that enhance the growth of and provide access to the game of golf worldwide, while preserving golf’s traditional values and passing them on to others. Its board is comprised of European Tour, LPGA, The Masters, PGA of America, PGA TOUR, R&A and USGA. World Golf Foundation oversees the collaborative industry initiative, We Are Golf, as well as World Golf Hall of Fame. For more information, please visit www.wearegolf.org.

from Golf News Wire http://bit.ly/2GVXibo

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More than just a cough: Advocating for Jack

PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

By the time he was 2 years old, Jack Baker had made some 20 trips to the emergency department and had been hospitalized about 10 times. For much of his young life, the little boy had struggled with a cough that his parents, Katie and Rick, could only describe as a barking, seal-like noise. He was often sick with colds, couldn’t sleep for all the coughing, had shortness of breath and wheezing, and had started developing a blue tinge around his mouth.

But when Jack’s parents raised their concerns to his pediatrician, they were told that he seemed like a perfectly normal baby. Later, as she reviewed his medical records, Katie would find a note from his clinicians: “Mother claims son has a cough, but no one has heard it.”

“I was a first-time mom,” Katie says. “I didn’t know what to think.”

Jack poses with nurse Leah Frain (left) and his parents.

An ‘aha’ moment

Eventually, Jack was diagnosed with asthma and given steroids and an inhaler. When he was 8 months old, an evaluation at another Boston hospital uncovered a diagnosis of tracheobronchomalacia (TBM), which occurs when a child’s airway collapses during breathing. This can make it feel hard to breathe, lead to a vibrating noise or cough, result in recurring respiratory illnesses and, over time, lead to progressive lung injury. Yet Jack’s doctors told his parents that he would grow out of it.

Frustrated, Katie began researching the condition and found the Esophageal and Airway Treatment (EAT) Center at Boston Children’s Hospital. “We called and spoke with Dori Gallagher, the center’s coordinator,” Katie remembers. “As she asked us questions about Jack, it was clear she understood his condition — it was a total ‘aha’ moment.”

No growing out of it

The EAT team not only confirmed Jack’s diagnosis of TBM, but they also validated the Bakers’ concerns about its severity. In fact, a three-phase dynamic bronchoscopy and dynamic airway CT scan revealed numerous arteries compressing his trachea, leading to a near-100-percent airway collapse and the beginnings of lung damage. There would be no growing out of it.

In 2017, the center’s surgical director, Dr. Russell Jennings, performed a posterior tracheopexy, followed by an anterior aortopexy in 2018. These procedures, which were developed and refined at Boston Children’s, opened up and supported Jack’s airway, making it easier for him to breathe without collapse.

The procedures — along with a handful of daily medications, inhaler, home oxygen and an airway clearance vest that helps clear mucus from his chest — have made a difference, but haven’t completely eliminated Jack’s symptoms. His care has been complicated by the fact that he’s allergic to most antibiotics, making it difficult to safely and effectively treat him when he gets sick, which is frequently.

“We’re still in the thick of things,” says Katie. “We all know he may need a third surgery at some point — but he’s definitely better than he was.”

Being an advocate

Despite his health challenges, Jack is an active little boy who likes trying new things, whether that means skiing, learning to swim or playing music. When he’s not obsessing over fire trucks, he’s traveling the world with his parents, a pastime made easier by a supportive care team. Jack’s clinicians help ensure that he has the oxygen and equipment he needs to travel, and are always available to respond to questions.

Katie recalls once calling Leah Frain, the EAT Center’s nurse practitioner with a concern. “She told me that she was at the starting line of the Boston Marathon and couldn’t talk long, but that she would call Jack in a prescription.” To the Bakers’ surprise, Frain wasn’t a spectator at the race — she was a participant. Yet Jack’s medication was still ready for him later that day.

Positive experiences like this have led Katie to join Boston Children’s Family Advisory Council, both as a way to give back and to ensure that all families receive the best care possible. “It’s been great to be more involved,” she explains. “We all have to be advocates for our children.”

Learn about the Esophageal and Airway Treatment Center.

The post More than just a cough: Advocating for Jack appeared first on Thriving Blog.

from Thriving Blog https://on.bchil.org/2USfqXB

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8 ways to get the most out of Spring skiing in Hakuba, Japan

Whether confined to school or work holidays or simply set on getting as many ski trips into the season as possible, a spring ski holiday definitely has it`s quirks. While warmer temperatures, sunnier skies and perhaps less crowds are definite pluses to skiing later in the season, slushier snow and fewer open slopes are some […]

The post 8 ways to get the most out of Spring skiing in Hakuba, Japan appeared first on A Luxury Travel Blog.

from A Luxury Travel Blog http://bit.ly/2vsSbsZ

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A guide for a luxury weekend in Rome

Millenary, historical, elegant, heritage and, eternal; There are not enough adjectives to describe Rome, one of the most fascinating cities in the world. Whether you’re looking for history, churches, luxury, nature or art, Rome has something that will attract every luxury traveler. I recently spent a long weekend (3 days) rediscovering the eternal city, and […]

The post A guide for a luxury weekend in Rome appeared first on A Luxury Travel Blog.

from A Luxury Travel Blog http://bit.ly/2DCJ90Q

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Should nurse accept reprimand offer from board of nursing?

A reader submitted a question about forgetting to report a misdemeanor conviction for a fight she was involved in with a neighbor to her board of nursing when she renewed her license.

The board offered her a reprimand as discipline and a fine of $500. The reader wonders what effect this will have on her nursing practice if she accepts the offer.

Generally, the types of discipline that can be imposed by a board of nursing include an administrative warning letter, reprimand, probation, suspension and revocation.

In addition, a board may require the nurse to pay a fine, as in the reader’s case, mandate the nurse to take a continuing education course or seminar on professionalism or nursing ethics, or place a limitation on certain aspects of the nurse’s practice.

A reprimand, sometimes called a censure, is less serious than other disciplines, and is because of some type of improper conduct by the nurse. Most often, no limitation of the nurse’s practice occurs. Nonetheless, it is still a discipline.

Except for an administrative warning letter, all other disciplines are public disciplines, available on the board’s website or included in its newsletter. In addition, federal law requires any discipline imposed by a board of nursing be reported to the National Practitioner Data Bank.

The National Council of State Boards of Nursing’s Nursy database also lists state disciplinary actions against nurse licensees in member states, including Arizona, Texas, Utah and Wisconsin. This database is available to the public.

Ramifications of a professional discipline

Regardless of the type of professional discipline, you need to ensure you never receive one. It is difficult and costly to challenge a board decision, as I wrote in my blog, “Is challenging a board of nursing an uphill battle?”

Challenging a board of nursing decision is difficult, and its ramifications are numerous.

The most obvious consequence of a discipline is its direct effect on continuing your nursing practice. In today’s world, employers seek employees with an active and unencumbered license. In most instances, any disciplinary action results in a non-hire.

As a result, keeping your current job after a discipline has been imposed, or finding a new position, is difficult at best.

A second consequence of a professional disciplinary action is a loss of any specialty certifications you may hold. As you know, you must meet certain requirements to obtain your certification.

If the certification body evaluates the discipline imposed as compromising any of those requirements, the result can be a loss of your certificate.

Your professional liability insurer also may see any discipline by a board of nursing as a breach of its contract of insurance with you.

Although some nurses do practice without professional liability insurance, this is a huge risk if you are sued for an injury to or death of a patient. Your personal assets become the basis for any financial payments to the patient or patient’s family as a result of a verdict against you.

And then there is the damage to your reputation. Your good name — and good practice — is worth its weight in gold. When lost because of a professional licensure discipline, it is difficult to re-establish.

You can read more about the ramifications of a professional disciplinary action against you in Jon E. Porter and Taralynn R. Mackay’s 2012 article, “The Collateral Damage to Nursing Licenses Caused by Nursing Board Disciplinary Actions.”

Reprimand recommendations for nurse readers

Despite the consequences of a professional disciplinary action, it is most likely in the reader’s best interest to accept the offer by her board of nursing.

If she refuses, the board can then take steps to initiate an administrative hearing against her. Administrative hearings are costly, lengthy and the outcome uncertain.

In either case, it is clear that if you are faced with such a decision, it is best to consult with a nurse attorney or attorney to carefully evaluate how to proceed.

Your attorney can advise you, based on your specific situation, of the potential ramifications of accepting the offer or, in the alternative, of proceeding to an administrative hearing.

It will be important for you to be honest with your attorney concerning the conduct that resulted in the board’s offer. The attorney is your advocate, so nothing should be kept secret.

If you accept the board’s offer, it will be in written form, and it is essential that your attorney review the agreed order or letter of discipline carefully before you sign it so you are as protected as you can be in the circumstance.

If you have been faced with accepting a reprimand by a board of nursing, how did you handle it? What was most helpful to you?

Take these courses about nursing practice:

Protect Yourself: Know Your Nurse Practice Act (1 contact hr) Nurses have an obligation to keep abreast of current issues related to the regulation of the practice of nursing not only in their respective states but also across the nation, especially when their nursing practice crosses state borders. Because the practice of nursing is a right granted by a state to protect those who need nursing care, nurses have a duty to patients to practice in a safe, competent, and responsible manner. This requires nurse licensees to practice in conformity with their state statutes and regulations. This course outlines information about nurse practice acts and how they affect nursing practice.

HIPPA and Confidentiality (1 contact hr) The federal Health Insurance Portability and Accountability Act was implemented in 1996 and has been revised since then. HIPAA can refer to guidelines that protect your ability to maintain your health insurance as you move from job to job or place to place (“portability”). HIPAA can also refer to efforts to simplify the administration of health insurance. These efforts include the creation of national standards for diagnostic terms, insurance forms and provider identification. Perhaps the most common use of the term for healthcare professionals, however, involves protecting the confidentiality and privacy of healthcare information. In this module, you will learn about parts of HIPAA, especially as they concern nursing and other health professionals and the protection of healthcare information. Because you play a key role in the production of healthcare information, you play a key role in its protection.

The Florida Nurse Practice Act and Rules (2 contact hrs) Nurses have an obligation to keep abreast of issues surrounding the regulation of the practice of nursing. The practice of nursing is a right granted by a state to protect those who need nursing care, and nurses have a duty to patients to practice in a safe, competent, and responsible manner. This course outlines information specific to the Florida Nurse Practice Act and the Florida Administrative Code.

The post Should nurse accept reprimand offer from board of nursing? appeared first on Nursing News, Stories & Articles.

from Nursing News, Stories & Articles http://bit.ly/2vrVW1G

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Stories from the transplant journey

PHOTO COURTESY OF ERIN

On April 11, transplant recipients and their families gathered at Boston Children’s Hospital to speak about their transplant journeys during a special nursing grand rounds. As Donate Life Month draws to a close, we share excerpts from their stories, made possible #becauseofadonor.

Erin – heart recipient

When Erin was just 6 months old, she was diagnosed with cardiomyopathy, which severely weakened her heart. At age 1, she was listed for a transplant — and received her new heart just nine days later.

“My heart was only expected to last about eight years. I am beyond thrilled to say that I am 22.5 years post-transplant. I have been able to keep up with all of my siblings, classmates and friends and live a completely full life. I played sports all through school, stood next to both of my sisters on their wedding days, helped my brother move into his first house, graduated from UNH with my bachelor’s degree (after taking a semester off to go through chemotherapy for cancer), accepted a full-time job doing early intervention, became a godmother to the best little boy, welcomed two nephews into the world, and met an amazing guy that I’m getting married to this summer! We love to camp, hike, kayak and go on adventures together. No words will ever begin to express how fortunate I am to be the recipient of this wonderful heart.”

PHOTO COURTESY OF MAE’S FAMILY

Mae – lung recipient

Mae was born with a rare genetic form of childhood interstitial lung disease. Although she was listed for a double-lung transplant shortly after her birth, her mothers, Courtney and Maura, hoped that she, like some children with this disease, would outgrow her symptoms. But after nearly a year without improvement, they decided to relist her. Just 30 days later, she received her new lungs.

“As we were anticipating the one-year “lungaversary” of Mae’s transplant, we were very aware of the pending milestone. To our surprise, our emotional energy that day was focused less on Mae’s miracle, and more on the donor family — what it must have been like for them in that moment, on the anniversary for them of what we assume was a tragic loss of their little miracle.

It is hard to comprehend that someone else’s loss and pain led to our freedom and joy. We remind ourselves that the donor did not die because of Mae, but since the donor’s life had come to an end, our gratitude is immense that the child’s legacy could live on in every breath Mae takes, and every heartbeat of another child somewhere out there and of the other organ recipient to whom this donor gave a new lease on life. Maura has said she always thought she would have three kids, and now she says she kind of feels like she does in our older daughter, Rosie, Mae and Mae’s donor.”

PHOTO COURTESY OF BOALVI

Boalvi – kidney recipient

When Boalvi was a sophomore in high school, he began feeling sick and weak. He was eventually diagnosed with nephotic syndrome caused by focal segmental glomerulosclerosis (FSGS), a pattern of kidney damage that occurs over time. In October 2016, he began dialysis three days a week while he waited for a transplant.

“The treatments were long and painful and I never adhered to the necessary liquid restriction. That’s when Dr. Nancy Rodig gave me a wakeup call and temporarily took me off the transplant waiting list. Months before, they had called me in for a transplant; however, there were complications and I wasn’t able to get the organ. I had been at the top of the transplant list and now I was taken off because of my lack of responsibility. The team suggested I entered a program called Med Coping. Dr. Shannon Hourigan was my therapist and she guided me throughout the rest of my dialysis and transplant. She made it much easier to understand why I was doing the things I was doing and what I could do to solve those problems. My outlook changed and I began to do right. They took me off of the waiting list in March and by late June, I was back on. On August 17, 2017, I received my new kidney. I’m grateful for everyone who made this possible for me, including the family of the donor.

Life after transplant has been amazing, I’m healthy, working and looking forward to going back to school in the near future. I learned to cherish my worst moments because they only make me stronger. As long as I’m breathing and living, I’m good.”

PHOTO COURTESY OF RILEY’S FAMILY

Riley – liver recipient

Riley was diagnosed with hepatoblastoma when she had just turned 7 months old, says her mother, Jill. Soon, her parents learned that she would need a new liver and she was listed for a transplant.

“Doctors determined that Riley’s father, Keith, was a match for living donor. This was such a relief, but I was also extremely scared to have both Keith and Riley go through this major surgery. We got the date of surgery and started to prepare. 

But surgery came sooner than we expected. We received news from Boston Children’s that there might be a potential deceased donor match for Riley. That was a long afternoon, thinking of the possibility of Keith not having surgery and Riley getting the transplant and feeling sad for the donor family. But on May 24, 2018, Riley received her new liver, when she was just 10 months old. It was still a few months until we knew what life would be like after transplant because Riley had to finish two more rounds of chemotherapy to be sure all the cancer was removed. It was a long year for our family, but we all made it through and are very grateful for that. Riley is now a very curious, wild toddler who loves her big sister, her bubbas (bottles) and stealing cookies from the cabinet!”

PHOTO COURTESY OF JORDI

Jordi – multivisceral recipient

When Jordi was about 13, he experienced pain that was ultimately diagnosed as liver cancer. After undergoing chemotherapy, he was listed for a multivisceral transplant, which he received relatively quickly.

“If it wasn’t for my donor, I wouldn’t have been able to graduate from middle school and high school, or to attend UMass-Lowell, pursuing a career as a doctor. I want to help other children out by becoming a pediatric oncologist. I know it’s a lot of work, but I’m determined. As a cancer survivor, I think I will be able to relate to these kids and inspire them.

I’m very grateful to be alive and to be 20 years old. I will keep pushing to live my life as much as possible — for me, and for the donor who is no longer here. Ever since this happened, I know I want to help out other kids, and I’m going to do that.”

PHOTO COURTESY OF KYMANI’S MOTHER

Kymani – lung recipient and organ donor

At age 10, Kymani received a double-lung transplant after being diagnosed with primary pulmonary hypertension three years earlier. He enjoyed nearly a decade with his new lungs, says his mother, Carolyn.

“Prior to transplant, Kymani’s life was very limited. He was not able to attend school due to being on oxygen 24 hours a day, and spent all or most of his time at home. After receiving his donated lungs in 2010, he returned to school. He was so happy to be able to do all the things kids his age were able to do. The nine years post-transplant were his best years, and he lived each and every day to the fullest.

Life took on a whole new meaning for him as he was able to try different activities. In high school, Kymani went from being somewhat of an introvert to becoming a gregarious person, whose presence was felt the minute he entered a room. He loved to dance and spend time with friends. He got involved in chorus, he ran track and even trained me to run around the track. He attended his prom accompanied by all his friends and graduated with them. He was forever grateful to the nurses who cared for him during many of his hospital stays. He decided that he wanted to be a nurse so he could give back what he had so graciously received. Kymani was a full-time student at Quincy College, where he was pursuing a nursing degree.

Unfortunately, Kymani gained his angel wings in October 2018 prior to seeing that goal come to fruition. However, in his dying he continued to make me proud. He had become an organ donor himself. Kymani’s story is truly rare, as he was able to play both roles in his short life. Without organ donation, Kymani would not have lived nine additional years. Although Kymani never met his donor family, he was forever grateful — and I am sure that it’s from that place of gratitude he chose to become a donor himself.”

Learn more about our Pediatric Transplant Program or share your story made possible #becauseofadonor.

The post Stories from the transplant journey appeared first on Thriving Blog.

from Thriving Blog https://on.bchil.org/2WcpNa1

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ECCO(R) GOLF Introduces S-LITE

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Revolutionary Design Creates Brand’s Lightest-Ever Leather Golf Shoe (LONDONDERRY, NH) – ECCO – a leading manufacturer of innovative footwear – unveils ECCO S-LITE, a one-of-a-kind hybrid shoe which breaks boundaries as the brand’s lightest-ever leather golf shoe. ECCO S-LITE takes a fresh, innovative approach to golf shoe design by blending cutting-edge engineering and comfort to ensure an ultra-light on-course experience. A multi-injection production process offers a TPU outsole that’s 66% thinner than ECCO has previously created, perfect as a packable playing option. “By owning our own tanneries and manufacturing processes, ECCO GOLF continues to find ways to deliver golfers truly distinctive footwear,” says Jesper Thuen, General Manager, ECCO GOLF USA. “This passion for performance and design is exemplified in S-LITE.” A stylish, diamond-shaped embossing on the ECCO RICH TWO-TONE YAK leather upper reduces weight while increasing comfort, and a soft textile lining provides natural water repellency and breathability. The E-DTS

LITE outsole offers on-and-off course traction and durability with exceptional flexibility. A molded leather heel counter and inside toe reinforcement offer additional support ensuring stable footing throughout the swing. Other unique features and benefits include: Premium, durable ECCO YAK leather, made in the company’s own tanneries An award-winning E-DTS

LITE hybrid outsole design that adds more than 100 traction studs and 800 traction angles for excellent grip in all playing conditions FLUIDFORM

Technology which is a ‘state change’ process that uses specialized fluid materials to form around an anatomical last, ensuring a finely-tuned balance of cushioning and rebound, while also creating an integral, flexible and durable bond, without the compromises common with stitched or glued assemblies A PU midsole with a PU wing, wrapping the sides of the foot delivers stability on and off the course A premium soft leather foot bed that offers a soft feel and natural moisture management ECCO GOLF shoes are worn in competition around the world by European Ryder Cup Captain Thomas Bjørn, Fred Couples, Lydia Ko, Minjee Lee and Caroline Masson, among others. ABOUT ECCO ECCO®, a world-leading brand of shoes combining style and comfort, has built its success on great design and leather quality, and innovative technology. Founded in Denmark in 1963, ECCO is one of the few major shoe manufacturers in the world, which owns and manages every aspect of its leather and shoe productions, and its retail sales. ECCO is among the largest producers in the world of high-quality leather, which is used in ECCO’s shoes, and own production of leather goods and is also sold to several leading luxury brands. Today, ECCO products are sold in 87 countries in more than 3,300 ECCO shops and shop-in-shops, and at more than 14,000 sales points around the world. The company is family-owned and employs more than 19,000 people worldwide. ECCO USA is based in Londonderry, New Hampshire. For more information: www.eccousa.com, 800.886.3226.

from Golf News Wire http://bit.ly/2PAza0M

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Nick: Overcoming his fears to make a difference for others

PHOTO COURTESY OF THE BROWN FAMILY

People decide to participate in a clinical trial for lots of reasons. For 14-year-old Nick Brown, it came down to wanting to make a difference in the world.

Diagnosed with autism at age 5, Nick has had a lifelong aversion to hospitals, and especially to needles. Yet, when his parents told him about a new clinical trial for a medication for kids with autism, he decided to give it a try.

“When he realized the importance of the study and understood what a difference it could make in the world, participating in the trial became an important goal for him,” says his mom, Charline.

A promising medication

The medication, called balovaptan, has already shown promising results in adults and has been given breakthrough designation by the Food and Drug Administration (FDA). When Nick decided to enroll in late 2017, the trial was enrolling kids ages 8 to 17. It has since opened to those ages 5 to 7. 

“This is the first medication specifically targeting social communication skills in kids with autism,” says Kate Pawlowski, research manager for the study. “Treatments usually mediate symptoms, not the core issues of autism.”

Charline heard about the study on social media and started looking at where the research was taking place. “We had never participated in a clinical trial before, but we were interested in this study because it was happening at Boston Children’s Hospital, which has such a great reputation,” she says. “We were also comforted by the fact that the medication had already been tested in adults.”

Nick with Kate Pawlowski, left, and Dr. Nicole Baumer [PHOTO: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL]

In December of 2017, Charline and Nick spoke with Kate on the phone, and she explained how the study worked and what was expected of Nick. “Kate was such a good fit from the start,” Charline says. “He had a lot of fears about the hospital and needles, but she explained everything to him in a way he could understand.”

Starting the trial

The first day of the trial was a little hard for Nick, but Charline says that with the help of Kate and the nurses, he made it through.

“I really appreciated the way they talked to him and helped him battle his anticipation and fear,” says Charline.  For example, they gave him a choice about having anesthetic cream put on his arm before having his blood drawn, or using a J-tip, which is a device that delivers numbing medicine directly under the skin using compressed air.

“The J-tip was really great for Nick, I’ve never seen one used anywhere else,” says Charline. “The only difficult thing for him was the sound, so he wore headphones when they did it.”

As the study moved forward, Nick relaxed, and enjoyed being a part of it. He actually looked forward to the daylong hospital visits and had a really great rapport with the team. Even the blood draws became easier, and a visiting nurse was able to draw blood every two weeks without using the J-tip. “We made the trip to Boston every six weeks. Nick had multiple blood draws, EKGs and neurological exams, and yet he always looked forward to it.”

Changes in home and at school

Because the study was blinded, Nick, his family, and his doctors don’t know if he was actually taking the medication, or getting a placebo. But Charline says they started to notice changes in his behavior, both at home and in school.

“He missed 45 days of school in seventh grade because of social anxiety,” says Charline. “Now he’s in eighth grade and has missed fewer than ten days, and some of those were for Boston Children’s visits.”

Charline says that participating in the study has given Nick new confidence. At the end of seventh grade, he presented a project to his English class to educate people about autism, and then repeated the presentation for 40 first responders in the community. “I don’t think he would have been able to do that if he hadn’t had the experience of participating in the trial at Boston Children’s,” she says.  

Nick, with his sister Andreana at Disney World, left; and playing the bishop in the musical Shrek, Jr.

At home, he’s a new kid, too. “It’s been so great for our family,” says Charline. “Before it was hard to talk with him or play a game with him, because he took everything as criticism and would have a tantrum. Now he’s more relaxed.” As Nick says, “When I was younger, I used to feel like something was not right. Now I feel like I can be proud of it, and autism is just part of my life.

Expressing himself

The family has also seen many indirect benefits of participating in an autism study that they hadn’t anticipated. Nick is better able to advocate for his needs to other people. Learning more about his diagnosis during the study has empowered him to speak up for himself and others who have autism. “When he was young, he’d say, ‘I have autism, I can’t do that,’” says Charline. “Now he says, ‘I have autism, let me explain what that means.’”

Continuing care in Boston

Now that Nick has completed the clinical trial, he is part of the open label study, officially taking the medication, and he continues to make improvements. “I told Kate that it doesn’t really matter if he was taking the medication during the trial or not. The experience of participating has changed his life and our lives for the better — it’s like night and day. We weren’t sure if a clinical trial would be too much for him, but we’re 100 percent certain we made the right decision.”

Nick and Kate during a clinic visit [PHOTO: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL]

Although traveling to Boston Children’s was a bit of a hike for Nick and his family, who live more than an hour away in New Hampshire, Charline says the frequent trips were worth it. In fact, they have decided to continue Nick’s care at the Autism Spectrum Center at Boston Children’s.

“People ask why travel all the way to Boston,” says Charline. “And I can honestly say that the level of care we’ve received is unmatched. We have never had anything less than a stellar experience with every person we’ve encountered at Boston Children’s, from the cleaning crew and cafeteria workers to the clinical staff. We are big fans.”

Learn more about the Autism Spectrum Center.

The post Nick: Overcoming his fears to make a difference for others appeared first on Thriving Blog.

from Thriving Blog https://on.bchil.org/2V3y4Re

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Luxury travel news this week

Here’s a round-up of luxury travel stories that have caught the eye this week. To make sure you receive these new weekly alerts in your web browser, please click on the red bell icon in the bottom right hand corner of the page and click ‘subscribe’ (works on desktop only – for other ways to […]

The post Luxury travel news this week appeared first on A Luxury Travel Blog.

from A Luxury Travel Blog http://bit.ly/2GEVF0B

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McKibbin Rallies to Win 9th Junior Invitational at Sage Valley Golf Club

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GRANITEVILLE, S.C. (April 27, 2019) – Northern Ireland’s Tom McKibbin, 16, of Newtownabbey captured wins both on and off the course in the 9th Junior Invitational at Sage Valley Golf Club. McKibbin shot a 1-under 71 in his final round, recovering nicely from yesterday’s 3-over 75 in brutally windy conditions that took a toll on the field. His first round 64 ultimately set him up for success, allowing him to finish 6-under at 210 for the tournament and giving him a one-stroke edge over Maxwell Moldovan of Uniontown, Ohio. McKibbin’s first appearance in the Junior Invitational was certainly one for the books. Not only did he secure the tournament’s Golden Jacket, but he was also awarded Sage Valley’s Paul S. Simon Character Award for his work with the Northern Irish Children’s Hospice at the opening ceremony earlier in the week. He also participated in a clinic with fellow Northern Irishman Rory McIlroy. “Just to be here is special, and to get the Paul Simon Award before the tournament started was a great honor,” McKibbin said. “And obviously to win today was unbelievable. I couldn’t ask for anything better.” Heading into the final round, 36-hole leader Nicholas Dunlap of Greer, South Carolina, sat at 7-under. McKibbin and Moldovan started the morning at 5-under and 4-under, respectively. Both players went toe-to-toe on the front nine shooting even par, and the back nine became the difference-maker as Dunlap and others fell back in the field. Following a bogey on Hole No. 12, McKibbin called his birdie on Hole No. 13 to tie Moldovan at 6-under his biggest moment. McKibbin would regain the outright lead with an impressive birdie on Hole No. 15, thanks in part to a powerful drive that cut off the dogleg, carried the bunker and left him 50 yards ahead of his competitor. He was able to get up and down for birdie on the par five to capture a lead he would not relinquish. Both McKibbin and Moldovan made bogies on the formidable Hole 17, where McKibbin had made a triple bogey on the previous day. He became the second player in three years to make a triple bogey on Hole No. 17 on Friday, fall out the lead and come back to win the tournament. After both made par on the final hole, Moldovan settled for second at one shot behind McKibbin with a combined 5-under 211. The 17-year-old is onto the next event as he heads to the U.S. Open Qualifier at Beechmont Country Club May 7, but his experience at Sage Valley Golf Club was one to remember. “I can’t even explain how incredible it was,” Moldovan said. “The course is second-to-none from what I’ve played. The people here, the overall atmosphere… it’s incredible.” Ricky Castillo (69-70-73–212) of Yorba Linda, California, finished in third at 4-under in the tournament. England’s Joseph Pagdin (69-75-69–213), Australia’s Karl Vilips (70-69-74–213) and South Carolina’s Nicholas Dunlap (68-69-76–213) finished tied for fourth. Second round leader Dunlap went into the back nine of the final round tied for the lead with McKibbin, but four bogeys and one birdie on the back nine dropped him to 3-under. “Yesterday I played really solid. I hit 10 fairways, and today I hit five,” said Dunlap. “But to play good or bad, it’s just great to be here.” As for what’s next for him, fifteen-year-old Dunlap’s answer helps put into perspective that these elite-level competitors have a lot of golf – and a lot of life – left. “I go back to school Monday,” he said. Eligibility for the 54-hole stroke-play Junior Invitational is rigorous, with 17 automatic qualifiers produced from the 2018 Junior Invitational Champion, 2018 Boys Junior PGA Champion, and furthest advancing junior in the 2018 U.S. Amateur, among others. Remaining slots are filled based upon year-to-date rankings. Click here for more information about player eligibility.

from Golf News Wire http://bit.ly/2ZC5BRj

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Support for midaortic syndrome: Christopher’s story

PHOTOS: COURTESY OF THE HUGHES FAMILY.

Lori Hughes wants people to know about midaortic syndrome. She talks to friends, family and teachers, and even runs a private Facebook group called MAS Kids for families dealing with this rare condition. “I remember how I felt 10 years ago,” she says. “It’s good for parents to be able to share their stories and connect with each other.”

A decade ago, Lori’s son, Christopher, was a seemingly healthy 2-month-old when a routine well-baby visit revealed what his pediatrician thought might be a heart murmur. Testing by a pediatric cardiologist near their home in upstate New York found that the little boy’s heart was fine. “I was relieved,” remembers Lori. Then the doctor checked his blood pressure. It was 160/90 — far higher than what’s normal for a child his age.

A rare diagnosis

The family packed their bags and headed to Albany for more extensive testing. But even as Lori held Christopher in her arms, his blood pressure continued to soar to 200/100. A nurse rushed him to the intensive care unit (ICU). He remained there for a week while clinicians stabilized him, and eventually discovered that his aorta — the body’s largest blood vessel — was unusually narrow in some areas. “The doctors had never seen this before,” says Lori. “They recommended that we come to Boston Children’s Hospital, where clinicians might be more familiar with it.”

Indeed, their first physician in Boston, pediatric surgeon Dr. Christopher Weldon, had seen similar anomalies in his patients with midaortic syndrome, in which the part of the aorta (that runs through the chest and abdomen) is narrow, leading to dangerously high blood pressure and other concerns.

Baby Christopher spent another month in Boston Children’s ICU, undergoing further testing. “At first, it seemed overwhelming,” Lori admits. “I was worried, upset and couldn’t sleep — I didn’t know what would happen. But as soon as we arrived in Boston, we were surrounded by doctors and nurses. I knew he would be getting excellent care.”

Smooth sailing — and then, surgery

The first year of Christopher’s life was challenging, as his family and clinicians tried to get his blood pressure under control. But once Dr. Michael Ferguson, co-director of the Midaortic Syndrome and Renovascular Hypertension Center, and his colleagues found the right dose of medications, the next seven years were fairly smooth sailing.

Christopher also underwent two cardiac catheterizations to help open up his left renal artery and aorta, although his right renal artery was too narrowed. In late 2016, Lori got a call from Dr. Ferguson. Christopher’s latest imaging scans showed that he was experiencing renal atrophy, or shrinkage of his right kidney. It was time for surgery.

The procedure, an autotransplant, moved Christopher’s right kidney from its native location to the pelvis, which helped improve blood flow and preserve function. The surgery, performed by Dr. Heung Bae Kim and Dr. Khashayar Vakili, was a success. Christopher recovered well, and has been off all blood pressure medications for about two years.

Connections and support

Today, Christopher is learning to play violin, sings in his school’s choir and — like most kids his age — is obsessed with the video game Fortnite. He and his parents know that coping with a chronic disease isn’t always easy. “We know he’ll likely need surgery on his left kidney eventually,” says his mom. “It’s tough not knowing what the future holds, but Dr. Ferguson, Dr. Kim and the rest of his clinicians make a great team for us.”

They’ve also connected with other children with midaortic syndrome and their parents. “In the beginning, I felt really helpless and alone,” says Lori. “Now, we understand that every kid with this condition is a little different, but there’s still a great community of support.”

Learn about the Midaortic Syndrome and Renovascular Hypertension Center.

The post Support for midaortic syndrome: Christopher’s story appeared first on Thriving Blog.

from Thriving Blog https://on.bchil.org/2UEBViw

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Celebrate Woodstock’s fifty-year anniversary – NYC weekend getaways

It is hard to believe, but it has been fifty years since the historic Woodstock festival in 1969. Woodstock’s effect on music, art, and culture is indisputable.  However, many people don’t realize that the Woodstock festival did not take place in the New York town of the same name.  Instead, due to logistical reasons, the […]

The post Celebrate Woodstock’s fifty-year anniversary – NYC weekend getaways appeared first on A Luxury Travel Blog.

from A Luxury Travel Blog http://bit.ly/2ZCapWu

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XUDE Hospitality Enters Golf & Resort Management Arena

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MIAMI, April 23, 2019 /PRNewswire/ — The latest entry into the golf and hospitality management business comes from XUDE Hospitality, which officially launched this week. XUDE Hospitality is dedicated to creating strategic partnering opportunities in the golf and hospitality industries. Assembling a team of seasoned professionals that have successfully owned and operated businesses in all segments of the hospitality industry in the United States and abroad, XUDE adds value to each strategic partnership by utilizing the team’s expertise, industry knowledge, and extensive experience. Leading the XUDE team is seasoned golf veteran and Managing Principal Michael Miraglia, with over 30 years of experience in golf and resort management/ownership. Ranked 17 in the “Most Powerful People in Golf” by Golf Inc. Magazine in 2012, Mike is the former President/COO of Fore Golf and was the Director of Golf & Spa Operations for Doral Golf Resort & Spa where he hosted six PGA and LPGA tournaments over four years. Joining Mr. Miraglia in this new venture are Jerry Moore, who most recently served as President of Pope Golf and was a Regional VP for ClubCorp, bringing over 30 years of successful leadership to the team; and Jeff Neal, an international award-winning hospitality and real estate executive with over 25 years of experience, who most recently served as the Corporate Director of the prestigious Puntacana Resort & Club in the Dominican Republic. The principals’ expertise is varied and complementary, specializing in Golf and Country Club Operations, Resorts, Hotels, Real Estate Development, and Lifestyle Programming. The team has a proven track record in revenue generation, membership growth, operating efficiency, construction and renovation in properties of all sizes – including public golf courses, private and semi-private country clubs, resorts, hotels, and real estate developments. In addition to being owners themselves, the principals have worked with many municipalities, memberships, developers, investor groups, and other owners. Michael Miraglia states, “We are experts when it comes to identifying and analyzing individual business opportunities and take pride in providing customized solutions that do not adhere to the cookie-cutter approach. Our experience allows us to develop a business plan that maximizes value for each client.” XUDE Hospitality is headquartered in Miami with offices in Naples and Sarasota. XUDE is actively pursuing new business opportunities. For information visit: www.xudehospitality.com.

from Golf News Wire http://bit.ly/2Xys4MY

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PUNTACANA RESORT & CLUB RECEIVES GOLF DIGEST EDITORS’ CHOICE AWARD FOR BEST GOLF RESORTS – DOMINICAN REPUBLIC 2019

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Following the Second Year Successfully Hosting the PGA Corales Puntacana Resort & Club Championship, Resort is Honored by the Accolade Punta Cana, Dominican Republic (4.23.2019) – Golf Digest announced that Puntacana Resort & Club is the 2019 recipient of the Golf Digest Editors’ Choice Award for Best Golf Resorts – Dominican Republic. The winners of Golf Digest’s Best Resorts in the Editors’ Choice category are those which the publication would recommend to any golfer. Resorts named to Golf Digest’s Editors’ Choice are first-class facilities that first and foremost have an exemplary offering of unique and quality golf courses. The accommodations must also have amenities that separate themselves above the fray. Puntacana Resort & Club is home to 45 holes of championship golf. Between Tom Fazio’s Corales Golf Course, and P.B. Dye’s La Cana Golf Course, there are 6 oceanfront and 14 oceanview holes. In 2018, Corales Golf Course was home to the only PGA TOUR in the Caribbean, hosting the Corales Puntacana Resort & Club Championship, now in its second year. “Golf has always been an important part of my vision for Puntacana Resort & Club, and we are extremely proud of our world class offerings,” said Grupo Puntacana Founder and Chairman Frank Rainieri. “We are honored to receive this distinction from Golf Digest, validating our hard work, passion, and desire to provide our guests a superior golf experience.”

Opened in 2010, Corales is an exclusive and dramatic 18-hole course with six Caribbean oceanside holes. Designed along the natural cliffs, bays, ocean coves and the inland lakes and coralina quarries, Corales Golf Course rates among the world’s finest golf experiences. The exhilarating challenge culminates playing the Devil’s Elbow, Corales’ last three holes. The Devil’s Elbow features the striking 18th hole with a dramatic forced carry over the cliff lined bay of Corales, an inspired capstone to a memorable and breathtaking golf experience. La Cana Golf Club is a 27-hole golf course consisting of three nines; Tortuga, Hacienda, and Arrecife. This Punta Cana golf course features 14 holes with ocean views of the crystal blue Caribbean Sea and has become a favorite of golfers from all over the world. Keeping in line with Puntacana Resort & Club’s efforts to be as environmentally friendly as possible, La Cana Golf Club was the first course in the Caribbean to use paspalum, a grass seed that can be watered using sea water. About Puntacana Resort & Club (www.puntacana.com) The development of Grupo Puntacana dates back to 1969 when Dominican businessman Frank R. Rainieri and Theodore W. Kheel, the late prominent New York attorney and labor mediator, created a partnership to construct a resort and real estate community that respects the natural habitat of Punta Cana while offering a world-class vacation experience. Maintaining a dedication to sustainable tourism, Puntacana Resort & Club has since grown to encompass over 26 square miles and now includes luxury hotel Tortuga Bay; The Westin Puntacana Resort & Club; the Four Points by Sheraton Puntacana Village; the Six Senses Spa; Oscar de la Renta Tennis Center; Grupo Puntacana Foundation; seven residential communities (Corales, Hacienda, Hacienda del Mar, Marina, Arrecife, Playa Serena and Tortuga); a full-service marina; eight restaurants; a shopping village; 45 holes of championship golf over two golf courses and Punta Cana International Airport, a modern facility that incorporates innovative and eco-friendly design. Currently, Punta Cana is the most highly visited Caribbean destination and is easily accessible from all over the globe.

from Golf News Wire http://bit.ly/2VXv2ud

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5 car-free aka care-free Greek destinations

For most of us our daily routine consists of crossing busy intersections, walking on sidewalks so we won’t get hit by cars and even using our own vehicle to get to any place that we consider to be far from home. What if we could go about our day without turning our heads to see […]

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from A Luxury Travel Blog http://bit.ly/2USNHef