Guild News

In This Issue

Funding Hope for Mental Health

2020 marks the 25th year that the Guild Association has directed a portion of its annual fundraising toward priority research and hospital funding needs selected by the Guild Association Board of Trustees. This program, called Funding Hope, enables guild members to meet the emerging needs of patients and offer hope where it’s needed most. This year, the Guild Association committed to provide $5 million over the next two years to support Seattle Children’s work to improve youth mental health.

Darcy Hollie has front-line knowledge of an escalating care crisis as a licensed mental health counselor serving adolescents and adults.

“Every adolescent I see in my practice has some level of anxiety or depression. It is rampant throughout the population and we have never seen these levels of anxiety,” says Hollie, a Seattle Children’s Guild Association board trustee and founding member of the We Believe Guild. “Untreated mental illness can result in a lifetime of struggle, missed opportunities and even lives lost. The need is critical, and we must shift the current state of care from crisis response to prevention, stability and resilience.” Read more.…

Director’s Note

Lately, a word I hear often is “unprecedented.” During a pandemic, we find ourselves facing challenges we couldn’t have imagined even just a few months ago. Here at Seattle Children’s, we are more grateful than ever for the unprecedented strength of our guild community.

This special edition of Guild News focuses on Seattle Children’s remarkable work to advance pediatric neuroscience. Several of those featured here were to be presenters at our annual meeting in May, and though we had to cancel our in-person gathering, we didn’t want to miss the chance to celebrate their great work. We’re also proud to feature stories showcasing how guild members have been there for each other and our community through the upheaval of COVID-19. Words cannot describe how much we appreciate every one of you for your grace, fortitude, dedication and all-around awesomeness!

You’ve shown me time and again that, together, guilds can do anything!

Warmly,

Aileen Kelly
Executive Director, Seattle Children’s Guild Association

Guilds Step Up to Fight COVID-19

During the COVID-19 crisis, guild members have repeatedly exemplified what it means to be a strong, caring community. From providing personal protective equipment to medical staff to delivering meals to care providers and families and reaching out to those who may be lonely or isolated, here are just a few of the ways you are making a difference. We are so proud that you are a part of our community!

Mask Ask Rapid Response

Jerry Gronau with donated masksWe want to extend a special thank-you to our office security lead Jerry Gronau (pictured) for facilitating front-line curbside pickup of all mask donations for the Guild Association.

When Seattle Children’s Guild Association posted on social media asking followers to consider donating any unopened masks in light of a global manufacturing shortage and the impact of the novel coronavirus 2019 (COVID-19), the community responded in a big way. Community members near and far rallied to donate more than 320,000 masks!

“We were overwhelmed by the rapid and extensive response of our guild members,” said Aileen Kelly, executive director of Seattle Children’s Guild Association. “In times like these, it is heartwarming to see people come together to serve the greater good. We are very appreciative of this generosity, and it’s not lost on us how a simple thing like a mask can make a significant impact locally, nationally and globally.”

“I am so grateful for our proactive and well-connected guild members!” says Dr. Ruth McDonald, vice president and chief medical officer, Medical Operations. “When we asked for donations through social media of basic isolation masks to protect our providers, patients and caregivers, we were overwhelmed with the outpouring of support. This really speaks to the power of our unique guild community. Thank you!”

Meal Momentum!

Christine O'Connell with donated meals for Ronald McDonald HouseChristine O’Connell, pictured with meals prepared by local restaurants for families living at Ronald McDonald House. Her daughter, Jane, was diagnosed with stage IV kidney cancer three years ago. Thanks to treatment at Seattle Children’s, Jane, now 6, has been in remission for 2½ years.

After canceling her guild’s March fundraiser due to COVID-19, Christine O’Connell, founder and president of the ImmunoMomentum! Guild, recognized the painful impact the state shutdown was having on small businesses. She reached out to sponsors who had always given generously when she’d asked for support in the past to propose a win-win idea.

O’Connell started with ImmunoMomentum! supporter Jersey Mike’s Subs and purchased dinner for residents of the Ronald McDonald House, which houses families with kids undergoing treatment at Seattle Children’s. Guild officers and friends contributed to the cause, supporting several local restaurants by ordering meal deliveries to the Ronald McDonald House, where on-site meals normally provided by volunteers are canceled due to the virus.

“There are so many levels of winning in this,” O’Connell says. “Not only are we helping small businesses and feeding families with medically fragile children, but helping these people helps me make sense of things and cope. I’ve been where these families are and I know how isolated and fearful we were three years ago, so I can only imagine what these families are going through with the added burden of the virus.”

If you would like to donate or know of a restaurant that would like to participate, email Immunomomentum@gmail.com.

Guild Advocacy Influences Change

Dr. Jeff Sperring, Congresswoman Pramila Jayapal, Suzanne Petersen Tanneberg, and Hugh EwartSeattle Children’s leaders visited Washington, D.C., last year to advocate for the expansion of mental health resources and programs for children and youth. From left, Dr. Jeff Sperring, CEO, Seattle Children’s; Congresswoman Pramila Jayapal, U.S. House of Representatives (WA-07); Suzanne Petersen Tanneberg, vice president, External Affairs and Guest Services, Seattle Children’s; and Hugh Ewart, senior director, State and Federal Government Relations, Seattle Children’s.

I want to thank guild members for their terrific support in advancing Seattle Children’s role in improving child and adolescent mental health. Your leadership in raising awareness dramatically improves the lives of children across the state.

In February, when we asked guild members to contact their legislators about a a mental health funding provision the response was immediate and incredible. We heard from guild members across the state who reached out to their representatives to ask them to vote to fund intensive outpatient and partial hospitalization programs through the Medicaid program.

Thanks to your help, the provision passed the House and Senate! This funding is a vital component of implementing services to address the youth mental health crisis and reduce youth deaths to suicide. Thank you, guild members!

Suzanne Petersen Tanneberg
Vice President, Seattle Children’s External Affairs & Guest Services

New & Next Campaign Highlights

Saying Yes to Healthier Brains

One of the goals of the It Starts With Yes campaign is to develop a much greater understanding of brain disorders including epilepsy, autism, mental health conditions, brain tumors and brain injuries. Your generous support of neuroscience research gives our scientists the funding to uncover the root causes of – and the connections among – diseases and disorders affecting kids’ developing brains. We are focused on moving beyond treating symptoms and behaviors to understanding the root causes of conditions. Learning how brain disorders originate will allow us to develop clinical trials that treat disorders at their source and are customized for each individual child.

Visionary Ideas to Increase Access to Autism Care

Dr. Mendy MinjarezDr. Mendy Minjarez has been connected to Seattle Children’s for as long as she can remember. Her mom was one of the hospital’s first nurse practitioners, and Minjarez volunteered as a counselor at Stanley Stamm Summer Camp when she was in high school.

By Mendy Minjarez, PhD, interim executive director, Seattle Children’s Autism Center

In addition to managing the center’s care team, services, operations, community engagements and partnerships, Minjarez is also on the team helping to launch Seattle Children’s mental health moonshot – strategizing how we can shift the paradigm of how we deliver mental health care.

At Seattle Children’s, we are working to create a future where there’s access to mental and behavioral health services when and where children need them. The services we offer at our Autism Center – one of the busiest in the nation – are just one piece of a bigger vision: a more comprehensive, collaborative approach to caring for mental health that includes building capacity in our community.

We are approaching this in many ways, including increasing the size of our physical space so we can see more patients, creating more opportunities for families to participate in research and, eventually, reducing the center’s wait times for diagnosis. I would also like to integrate technology into our new space in unique ways. For example, possibly acting as a hub for web-based training with community providers or having every office equipped for telehealth appointments.

I’ve also been thinking about how we can shift our focus to outreach – training other providers about autism. One of the biggest reasons families wait for an autism diagnosis is that there are not enough providers around the state who are comfortable making that initial diagnosis. Early intervention can change a patient’s trajectory, but patients need an initial autism diagnosis before they can receive other services. One of our goals is to help train and equip more providers in the community to make an autism diagnosis so patients get the care they need faster. Fortunately, Seattle Children’s has generous donors, is respected by the legislature and has strong community relationships to help make these changes happen.

I’m thankful to guild members for stepping up to support our work in so many ways, from fundraising to volunteering to advocacy. Thank you for believing in our work and enabling our progress to help more kids and their families get the services they need and deserve.

Perfect Pitch: An Extraordinary Surgery Maintains a Patient’s Life Passion

Kira Iaconetti with friends in her hospital roomKira Iaconetti in her hospital room after brain surgery, surrounded by friends from her community theater.

By Kira Iaconetti, Lynden, Washington

A performer and musical actor since early childhood, this teen suddenly struggled with tone and pitch. After an MRI revealed a tumor in her brain, she and her doctors found a way for her to keep pursuing her passion.

The whole neurosciences team at Seattle Children’s knew how important singing is to me. Instead of doing their best and hoping I would come out of surgery still able to sing, they came up with a plan to wake me up in the operating room and have me sing during my brain surgery! I chose to sing “Island in the Sun” by Weezer while the team stimulated the brain tissue around the tumor to test whether the tumor could be removed without affecting my ability to sing. Everyone kept telling me how brave I was, but I think Dr. Jason Hauptman was the bravest of all – he was the one poking my brain! Because of the novel surgery Dr. Hauptman and his colleagues performed, they not only saved my life but also saved the performing life I’ve loved since I was 6 years old.

Music therapist David Knott worked with me to do “music mapping” tests during the surgery. I listened to short rhythms and melodies and then sang them back to him while the neurosurgery team directed short bursts of electricity to specific parts of my brain – the parts responsible for my ability to both listen to and make music.

After surgery, David transposed the same song into four different keys and had me sing each one. He said I nailed it! This was just 48 hours after my “awake craniotomy,” which is pretty amazing.

From the nurses to the surgeons to the specialists, I am so thankful for my entire care team. Thank you for everything, Seattle Children’s. And thank you guild members for supporting so many programs that help kids like me continue to pursue our dreams.

“Because of the novel surgery Dr. Hauptman and his colleagues performed, they not only saved my life but also saved the performing life I’ve loved since I was 6 years old.”
 Kira Iaconetti

About Kira

Smitten with the theater from her very first show, a parody of Beauty and the Beast, Kira has been singing and acting in community musicals and school productions ever since.

Guild Donations Fuel Imaginative Mental Health Solutions

Dr. Kendra ReadDr. Kendra Read

By Dr. Kendra Read, clinical psychologist, director of anxiety programs, Seattle Children’s

We are incredibly grateful for the Guild Association’s Funding Hope gift, which helps us greatly expand on our mission of improving access to mental health care for all families – breaking down these barriers gets to the heart of the hospital’s value of equity. We couldn’t make these gains without guild support.

Anxiety is one of the main reasons kids come to us, and the standard medical model of individual therapy is not sustainable because we can’t reach enough kids that way. Until Funding Hope, every month we were turning away 70% of the families who came to us for help! This visionary gift allows us to think outside the box and come up with creative solutions like the stepped care model, where we offer lower intensity interventions more broadly, and then step up the intensity of interventions for the families who need them.

It enables us to increase our capacity in a variety of ways, including widening our geographic reach to serve more families by opening the new Psychiatry Clinic at Seattle Children’s North Clinic in Everett. We are also laying out the groundwork to reach more kids by building resources in places where families already congregate, like schools and primary care offices.

A big misconception is that you must have an advanced degree to help people struggling with an anxiety disorder. In reality, many kids can be just as well served by the people who know them in their community if they have some training. Across the mental health world, we are focused on how to tackle this problem of dissemination and implementation of evidence-based practices – so teachers, pediatricians and parents can all play a part in helping kids navigate mental health challenges, and our communities can become a stronger safety net. In the midst of COVID-19, we are anticipating increases in mental health needs of youth and their families alike, particularly anxiety. With guild support we are making advances to provide access to care like never before.

Tips from Dr. Read: Caring for your own mental health during COVID-19

  • Carve out time just for you. Take a walk, read a book, garden, listen to music, make art or exercise – make time every day to do “what fills your bucket.”
  • Acknowledge how you feel and validate your emotions. There are no wrong emotional reactions and people are feeling a whole range of things right now: anxiety, fear, grief and even discomfort about feeling okay. It’s beneficial to “Name it to tame it.”
  • Be a critical and selective information consumer. In addition to COVID-19 news from your TV or phone, your own thoughts can spiral, making it harder to cope. Monitor the information coming in and become aware of what’s already swirling around your brain. Ask yourself, “Is it helpful for me to hang on to this or is there something more useful I can focus on?”

Do you know a guild member who may be isolated or need support during this time?

  • We would like to reach out. Please let us know by calling 206-987-6928.

Thanks for Backing My Mental Health Mission

Former patient Javi BarriaJavi Barria, 22, says that though her anxiety and Asperger syndrome are a part of her, she is much more than her diagnoses: “They didn’t define me in the hospital, they don’t define me now, and they will never define me.”

By Javi Barria, Tacoma, Washington

Mental health is something that affects everyone. Whether it is a bad mental health day or a mental health disorder, it is something we all have to face at some point.

I was in middle school when I started having panic attacks. And by freshman year, my brain couldn’t take any more pressure. When I was first admitted to the PBMU, I couldn’t perform basic functions such as reading, eating or walking. My team got me through my darkest days by getting to know me as an individual and believing in me, even when I didn’t believe in myself. Their constant support, therapeutic care and love without platitudes – combined with daily heart-to-heart talks – helped me stabilize so I could move to a behavioral treatment center in Tacoma, Washington, where I lived for a year and a half.

Last June, on behalf of Seattle Children’s and the Children’s Hospital Association – and all of the kids with stories similar to my own – I traveled to Washington, D.C., to meet with members of Congress to inspire them to help make a change. My recommendations included prioritizing mental health in early childhood, funding for schools to implement mental health programs, and requiring states to establish response services for children experiencing mental health crises.

At Seattle Children’s, a staff member taught me the acronym HOPE: Hold On Pain Ends. The Guild Association delivers HOPE to many more children and teens through the Funding Hope gift. When kids are in crisis, they can’t see out of it. This funding makes it possible for many others to know they are not alone in their struggles, and that it will get better. Thank you!

“This funding makes it possible for many others to know they are not alone in their struggles, and that it will get better.”
 Javi Barria

About Javi

A former Seattle Children’s patient who received care on the Psychiatry and Behavioral Medicine Unit (PBMU), Javi currently works in the outdoor recreation industry while taking a break from her studies at the University of Washington.

A Letter From the CEO

Dr. Jeff Sperring and patient

Dear guild members,

Today, It Starts With Yes means more than ever before. A quick glance at the annual report (PDF) shows the impact and scale of your giving. The Guild Association is the largest single donor to Seattle Children’s, and we cannot thank you enough – especially now.

The COVID-19 pandemic has illustrated not only your dedication to our mission, but also your ingenuity. We know that many of you have had to make difficult last-minute decisions to cancel planned events after months of preparation. But instead of dwelling on the negative, you pulled together to create a shining silver lining to this global crisis. You and your supporters continue to step up to fill the gaps so families who need Seattle Children’s continue to receive expert care.

Your gifts alleviate stress and help children heal. They also provide hope when families need it most. I see it time and again, reflected in the faces of the moms and dads who depend on us for care. Your yes is lifting people up and making children smile in a time marked by extremes of all kinds. Our guilds are leading the way with extreme kindness.

With gratitude,

Dr. Jeff Sperring
CEO, Seattle Children’s