Help, Understanding & Group Support HEART TO HEART

Volume 1 ♥ Spring 2020

KAWEHI'S JOURNEY "I'M A HEART WARRIOR"

Lea says aside from taking medications every day, more than average doctor appointments, and having to take extra precautions to avoid exposure to illness, Kawehi is pretty much a “normal kid” and is in her second year at Kamehameha Preschool (now with distance-based educational support). For Lea, watching Kawehi grow and thrive is a joy. And like typical siblings, Kawehi and her twin brother, Aalii, fight a lot, but they’re close and definitely love each other, Lea added. Lea learned about HUGS through her social worker at Lucile Packard Children’s Hospital in Palo Alto and received airfare assistance from HUGS for family members to be there for Kawehi’s latest surgery. The Weldon Family Last October, the Weldon family participated in the train ea Weldon of Kauai was thrilled when she learned she was ride at Kilohana Plantation Railway and picnic lunch with games Lhaving twins! It would be the first Mother’s Day she would and prizes for our HUGS families that was sponsored by Saint never forget. Michael and All Angels Episcopal Church. About the event, After a difficult labor, Lea gave birth to a girl, Kawehionalani, Lea said, “It was awesome. It means a lot to be able to connect and a boy, Aaliikumakani, in May 2015, a day before Mother’s with other families who have gone through similar journeys, as Day. Shortly after, the pediatrician noticed that Kawehi’s it can be a very lonely thing.” Kawehi and Aalii also loved the heart wasn’t functioning properly and her brother was also Christmas gifts they received from HUGS. experiencing medical complications. Both babies were It’s been an extra challenging journey for the single mother immediately medevacked to Kapi‘olani Medical Center for and two children. In addition to Kawehi’s serious heart condition, Women & Children without Lea due to her own recovery. the family lost their home and possessions in the severe flooding Kawehi was born with multiple heart defects and an initial on the Garden Island in 2018. The current COVID-19 crisis diagnosis regarding her left ventricle was actually for the right and subsequent lockdown on Kauai is also stressful. Yet, their ventricle – her heart was backwards! She was transported to Rady spirituality and faith and the Children’s Hospital in San Diego, and 10 days into her life, she support of family and friends received her first open-heart surgery. Her maternal grandmother keep this family strong and and aunt flew to be with Kawehi while Lea made the difficult resilient. They are grateful decision to stay back in as her son regained his for all that they have, which strength and nourishment in the Neonatal Intensive Care Unit includes being a HUGS (NICU). family. Kawehi, now 4 years old, has already had three open-heart Thanks to your support, surgeries, three heart catheter procedures and pulmonary artery HUGS families like the reconstructions. Mom says recovery for the most recent open- Weldons are enjoying life heart surgery, which was last August, was a bit harder; however, every day. Kawehi’s energy level is much higher now. She has a scar running down the middle of her chest, and proudly shows it, often exclaiming, “I’m a heart warrior!” The Weldon Twins ALOHA! On January 10th, the HUGS staff held a staff retreat. The theme was “Change.” As the start of a new year in a new decade, the HUGS Board of Directors’ and

Help, Understanding staff’s goal was to create a strategic plan for the next five years. We anticipated & Group Support 2020 to be filled with exciting changes relating to funding sources, new For ’s Seriously opportunities and strengthening our programs. At the time, the average person Ill Children and Their didn’t know that coronavirus existed because the first case in the United States had not been Families reported yet. Little did we know how much change would impact us and our HUGS families in

HONORARY TRUSTEES just a few weeks. June Jones By March, COVID-19 had quickly spread worldwide, becoming a household word and Barbara Marumoto-Coons changing the nature of everyday life. At HUGS, our families are at the heart of everything we BOARD OF DIRECTORS do, and their health and well-being are our primary concern, as well as our staff, volunteers, Calvert Chipchase IV donors and the greater community. Following guidelines from the Hawaii Department of Health President (DOH) and Centers for Disease Control and Prevention (CDC), we suspended all monthly Julie Hirano Kaneko HUGS events, including family dinners, respites, Mom’s Nights and Dad’s Nights, at least Vice President through the end of May. With our staff all working remotely from their homes, we felt strongly Patrick Klein Vice President that we still needed to stay engaged with our HUGS families and provide them with needed Charles Loomis support. We stepped up our monthly family calls from every other month to every month and Vice President are encouraging our HUGS Moms and Dads to use the HUGS Moms and HUGS Dads Facebook Ben Morgan Groups, respectively. We are thrilled to see the increase in conversations and also are doing Vice President virtual events to stay connected with our families. Kevin Yim Vice President Our fundraising events were also impacted. The HUGS Board of Directors made the Catha Combs difficult decision to forgo our annual HUGS Gala, which was planned for May 8th at the Secretary Sheraton Resort. As our largest fundraising event of the year, it raises much needed, JoAnn Lumsden unrestricted funds to maintain our programs for our HUGS children and their families at no Treasurer charge. We are so very grateful to the companies and individuals that have generously converted Christian Chambers, Esq. Lauren Kwon Dawson their table purchases into a 100% donation to HUGS. Kanani Kealoha-Faleafine Our Tacos for HUGS event featuring Jimmy Taco’s Tacos at Chingu was also postponed. Erin Kirihara Anne Lee This was the first event planned by our new HUGS Young Professionals (also known as Iris Matsumoto Terri Okada #HYPSquad), and they are hoping to secure a future date when the outbreak is contained. Kirsten Pennaz, RN The statewide mandate has separated people from their workplaces, schools and friends and Robb Tanaka Bill Tobin disrupted our society unlike anything else. As a result, we’re also helping more of our HUGS Frank Tokioka II families who are needing community resources and assistance, because they are experiencing Theresa van Greunen less work hours or have lost their jobs while still caring for their seriously ill child. MEDICAL ADVISORS This unforgettable change has taught us to embrace technology in new ways to continue to Desiree Medeiros, M.D. support our children and families. We have become even more flexible and nimble to quickly Darryl Glaser, M.D. respond to growing needs and changes and are taking advantage of available opportunities. Howard Klemmer, M.D. We are using this time to think more strategically and to focus on planning, communicating, Joan Naguwa cross-training, and improving our systems so that we will be ready to help Hawaii’s seriously ill Executive Director children and their families in more impactful and effective ways. The HEART TO HEART newsletter is published three Thank you to all of you for supporting HUGS and Hawaii’s seriously ill children and their times a year (Spring, Summer, families through good times and bad. Please continue your support as so many of our families Fall) by HUGS located at 3636 Kilauea Avenue are really struggling right now. Your generous gifts of resources and time enable us to continue Honolulu, HI 96816-2318 our mission for more than 400 Hawaii families each year. If you need to reach us, please email us Tel: (808) 732-4846 Fax: (808) 732-4881 at [email protected] or call us at 808-732-4846. Please take care, be safe and stay healthy. Email: [email protected] Website: www.HUGShawaii.org

Joan Naguwa

AUW Designation #96590 Executive Director CFC Designation #84333

2020 Spring Newsletter [ 2 ] ♥ HUGShawaii.org IN MEMORIAM Joel Emperador didn’t have children of his own but he had a big heart for kids, as a doting uncle, hospital leader and HUGS board member. He passed away on November 20, 2019 with his family by his side. Joel served on the HUGS Board of Directors from 2015 until his passing. As a member of the Program Committee, he was instrumental in confirming eligible diagnoses and providing valuable guidance for continual improvement of our programs. In addition, he also served on the HUGS Gala Committee. “Joel was a dedicated board member, who had great passion for our HUGS mission and a special place in his heart for HUGS and our HUGS kids,” said HUGS Executive Director Joan Naguwa. He is greatly missed. Upon moving from California to Hawaii in 2011, he joined Kapi‘olani Medical Center for Women & Children as Director of Pediatrics and Critical Care and was promoted to Vice President of Hospital Operations in 2016. It was Joel’s wish that memorial gifts in his name be made to HUGS as well as in his mother’s name, Barbara Emperador, who predeceased him in 2018. HUGS will pay tribute to Joel posthumously at next year’s HUGS Gala. Our hugs go out to his husband, Paul Burnham, and to the Emperador family.

Magic and Merriment at HUGS Christmas Party

here was magic and merriment at the HUGS Christmas Party at the THawaii Okinawa Center on December 7. HUGS dad and son Patrick and Zachary Tyrrell kept the program rolling as co-emcees. Dressed in their holiday best, families took photos with Santa and Mrs. Claus and at the From Above Entertainment photo booth. Alan Arita wowed the crowd with magic and mind-reading, while his wife, Suzette, was equally amazing with balloon twisting. The party ended with “HUGS Got Talent” featuring performances by budding singers, dancers and ukulele HUGS kiddos gather around Santa players among our talented HUGS kids. and Mrs. Claus Our special thanks to the team at Sky River Management for sponsoring and volunteering at the event. As in past years, each child went home with presents, thanks to the many toy drives organized by Central Union Church, ChaneyBrooks, First Insurance Company of Hawaii, Hard Rock Cafe, Hawaiian Airlines Pilots and Flight Attendants, Hawaiian Properties, Holy Trinity Church, Johnson Controls, Kaimuki Christmas School, New Hope Leeward, Spine & Rehab, Pacific Guardian Center, 2 Rende Vuu, and Tiki’s Grill & Bar.

Magician Alan Arita visits with Co-emcees Patrick and Families mugged for photos HUGS families table to table Zachary Tyrrell at the photo booth

Photos by Lester Tabucbuc

2020 Spring Newsletter [ 3 ] ♥ HUGShawaii.org Program Spotlight Dad's Nights Bring HUGS Dads Together ne of the unique features about HUGS is having peer Community Resource Development Coordinator. “It has Osupport activities that meet the needs of every family been a pleasure being a part of these gatherings and touching member. One of the peer support activities that has seen to see moments when dads connect and become transparent growing participation is the monthly Dad’s Nights, with with their feelings, to encourage and support one another.” venues alternating between Honolulu and West Oahu. “I look forward to Dad’s Nights. The friendship with Although the Dad’s Nights are currently on hiatus, we look the other Dads and HUGS staff is priceless,” says HUGS forward to getting together in the near future. A virtual Dad Trevor Ward. “They understand what you’re dealing Dad's Night was held on April 21. with, which allows for conversations, sharing and emotional The purpose of Dad’s Nights is to provide opportunities support that is unique and special,” he continues. for dads to connect and develop relationships of friendship Another HUGS Dad, Luis Maldonado, adds, “I always and support. These gatherings are especially helpful for dads looked forward to Dad’s Nights when I can be myself with a newly diagnosed child, as well as dads going through and relax with other dads who understand, because they a difficult time, to develop relationships with seasoned dads, are going through similar issues. This is something my who have been in their shoes, allowing them to freely share coworkers cannot relate to. I’m going to miss these events feelings while supporting each other within a group that and this great group of guys.” Luis and his family will be truly understands the experiences and challenges they all leaving Hawaii in June. face. These relaxed, fun activities range from dinner and a Special thanks to our sponsors that are making Dad’s movie, bowling, driving range, and canoeing, to a barbecue Nights possible in 2020: City & County of Honolulu at the beach. For the past two years, the HUGS dads also Department of Community Services, Par Hawaii and started a Fantasy Football League called, “Dads Who Hug,” Porter McGuire & Kiakona. with a perpetual trophy and a plate engraved with the name of the season’s winner each year. “We’ve seen a wonderful spike in attendance over the past two years, mainly due to the fact that we have a male staff member, Alan Castillo, who attends Dad’s Night,” explains HUGS Executive Director Joan Naguwa. “The Dads are more open and willing to share when Alan is there rather than a female staff member, she adds. “At the January event at Square Barrels, which hosts Comedy Nights, Dads burst out laughing at the jokes; in the past, they may have held back a little because female HUGS Dads got together at the Aiea Bowl and The Alley coworkers also attended the event,” says Alan, HUGS Restaurant in February.

Got Extra HawaiianMiles? Donate Your Car through Kokua in Kind When you donate your extra HawaiianMiles to HUGS, you’ll be helping our families travel from the Neighbor Islands to Oahu or to the mainland for life-saving medical procedures including specialized surgeries or transplants. Go to www.hawaiianairlines.com, click Donating your car through Kokua in Kind, LLC is an the HawaiianMiles link, select Redeem, then Donate easy way to support HUGS and get a tax deduction. Miles and scroll down to select HUGS. Most vehicles — car, truck, van, motorcycle, or boat — are accepted, running or not. Mahalo to New Hope Leeward for holding a Visit www.kokuainkind.com to get started, and HawaiianMiles drive for HUGS. select HUGS as your charity of choice.

2020 Spring Newsletter [ 4 ] ♥ HUGShawaii.org Volunteer Spotlight HUGS Club at As sophomores, they did something very special. With the help and support of their club advisor, Anya Pitzer, they gathered friends and other students to form the HUGS Club at Punahou School. During 2019, in addition to helping at respites, the HUGS Club lent a hand in a number of ways, including walking with HUGS in the Hawaii Lodging & Tourism Association’s Visitor Industry Charity Walk, helping at Hard Rock Café’s Founder’s Day Carnival that benefited HUGS, volunteering at our Christmas in July celebration at Wet’n’Wild, and sorting toys in preparation for Christmas. HUGS Club members continue to support HUGS and are champions of our programs. Laura says, “My experience HUGS Club members walk with HUGS in at HUGS has taught me many lessons about empathy and last Year's Visitor Industry Charity Walk. gratitude.” She adds, “Throughout my years volunteering s a small nonprofit organization with a staff of seven at HUGS, I have made many memories and connections Afull-time employees, HUGS relies heavily on volunteers I will never forget. I’m happy to be a part of such a great in all forms, from students, working adults and retirees, community of staff, families and volunteers.” to corporations and service groups. They provide valuable Elsa shares similar sentiments. “Over the many years support in a variety of ways and truly make a difference in volunteering with HUGS, I have witnessed a genuine spirit the lives of our HUGS kids and their families. One group in the organization that inspires me to be a lifetime active we're especially appreciative of is the student-driven HUGS member of my community and cherish life’s gifts.” Club. Mahalo to our HUGS Club at Punahou School for Elsa Kinney and Laura Gries were 8th graders at bringing joy and smiles to our HUGS kids and their families. Punahou School when they were first introduced to HUGS. Elsa and Laura became volunteers and helped in our Respite program. Hugs4HUGS Campaign Raises Awareness and Funds for HUGS

#Hugs4HUGS Nov. 4, 2019 - Dec. 9, 2019

Hugs4HUGS, which completed its third year, generated more than $13,000 for HUGS. The grass roots campaign, which is aimed at raising awareness and funds for HUGS, included partnerships with Teapresso Bar with a signature HUGS Tea, Watanabe Floral, Butterfly Ice Cream, and Tory Burch Ala Moana, as well as Facebook and GivingTuesday donations.

On GivingTuesday, Dec. 3, HUGS, along with other Kokua Mai charities, joined First Hawaiian Bank and the Hawai`i Community Foundation (HCF) at King and Bishop streets to celebrate the spirit of giving. As part of the festivities, HUGS won a $1,000 grant from HCF, thanks to HUGS Board member Charlie Loomis whose business card was randomly pulled.

2020 Spring Newsletter [ 5 ] ♥ HUGShawaii.org PHOTO GALLERY Help, Understanding & Group Support

Hawaiian Telcom Gifts Huggable Malama Bears Tory Burch Gives Back Hawaiian Telcom Brand Champions donated the proceeds of their Malama Bear On GivingTuesday, Tory Burch Ala Moana partnered with HUGS for an in-store project to HUGS. Employee volunteers solicited donations of fabric and old promotion. aloha shirts, which they cut, sewed and stuffed them to make soft, huggable bears. Each bear is finished with a little tag.

Subaru Hawaii Shares Some Love with HUGS Subaru Hawaii selected HUGS as one of three beneficiaries for its 2019 “Share HomeWorld's Stressless "Chairity" Promotion the Love” campaign, which resulted in a generous donation of $15,000 to HUGS. The campaign was featured on TV, social media and also included a Mahalo to the team at C.S. Wo & Sons for selecting HUGS for HomeWorld Subaru Hawaii Ride and Drive event at . Furniture’s Holiday Stressless “Chairity” Promotion for the third year in a row.

Lancer Charity Jamboree Helps HUGS Heart for HUGS from Zippy's Proceeds from the Sacred Hearts Lancer Charity Jamboree, featuring girls Zippy’s celebrated Valentine’s Day by hosting two families again at its Pearl City basketball teams from , – Hawaii School for and Kaneohe locations. Girls and Kalaheo and Kauai high schools, were donated to HUGS.

2020 Spring Newsletter [ 6 ] ♥ HUGShawaii.org BACK IN THE DAY Donate while Shopping August 2012 through AmazonSmile

Have you made HUGS your AmazonSmile charity? When you shop on Amazon, switch to AmazonSmile and select HUGS For Hawaii’s Seriously Ill Children and Their Families as your designated charity. It’s just like Amazon Prime but shopping through AmazonSmile will benefit HUGS. When you shop through AmazonSmile, HUGS will receive a donation from your purchase at no additional cost to you! Think of it NOT as shopping, but DONATING! To make us your charity of choice, go to https://smile.amazon.com/ch/99-0213594

Special Dates coming up: Mother’s Day is May 10 and Father’s Day is June 21.

“Hawaii Five-O” stars Alex O’Loughlin and Scott Caan surprised our HUGS families, like the Whaleys, when they showed up at our Surf4HUGS event in 2012. After a successful 10-year run, the series finale of the popular Hawaii-based TV show aired on April 3rd.

RIGHT ON TARGET!

HUGS has been chosen to participate in Target Circle, Target’s charitable giving program. And you have the chance to direct a portion of Target’s donation to HUGS!

From now through June 30th, vote for us through the Target Circle program. To find out more and to join the Target Circle loyalty program, go to www.target.com/circle

Please help us make the most of this opportunity, especially during this challenging time for HUGS children and their families. Every vote counts to help us receive a portion of the Target funds as we continue our mission of improving the quality of life for Hawaii’s seriously ill children and their families.

As you earn more votes, you can keep voting multiple times during the campaign.

Thanks so much for your support!

2020 Spring Newsletter [ 7 ] ♥ HUGShawaii.org NonProfit Organization U.S. Postage PAID Honolulu, HI Help, Understanding & Group Support Permit No. 9613

3636 Kilauea Avenue • Honolulu, HI 96816

SAVE THE DATE! Join Our HUGS Team at the Charity Walk

Join our HUGS Team at this year’s Visitor Industry Charity Walk as we aim for 100+ walkers. This year’s charity walk will be held on Saturday, November 14, beginning at 7 a.m. at Ala Moana Beach Park. As in years past, there will be refreshments at various checkpoints along the way

To register, go to https://app.mobilecause.com/vf/Oahu/team/HUGS or text “Oahu130” to 71777 and click on “Pledge to This Team.” $40 for adults and $25 for children under 18.

2020 Spring Newsletter [ 8 ] ♥ HUGShawaii.org