Guild Delivers Transformational Test for Mito Families
Every day, worried parents arrive at Seattle Children’s looking for answers to puzzling medical questions. Some of the more perplexing of these relate to the mitochondria — microscopic structures inside our cells that make most of the energy we need to live. Mitochondrial disease is a chronic, progressive genetic disorder that occurs when these cell powerhouses cannot create enough energy for a cell or organ to work properly. Each year, Seattle Children’s treats 60 children with mitochondrial disease, with symptoms ranging from mild weakness to severe cognitive and physical disabilities.
Thanks to the determination of one guild, the hospital is a leader in mitochondrial disease research and treatment. The Mitochondrial Research Guild, formed by a group of “mito parents,” helped fund and advocate for the recruitment of a dream team of mitochondrial experts at Seattle Children’s.
Consider expanding your own guild’s impact by strengthening connections with the Guild Association community:
- Engage with the Guild Association on Facebook and Instagram: @SCGuilds. If you don’t have a social media presence, consider appointing a member to create accounts, manage posts and report back to your membership.
- Request to join our exclusive guild member Facebook group to share resources like extra event supplies, offer fundraising tips, or ask questions of other guild members.
- Network with members of other guilds by attending a Guild Association event like Best Practices.
- Volunteer at another guild’s event and invite them to do the same at yours. You’ll learn about each other’s goals, gain fundraising insights and make new friends.
- Share your savvy with another guild — for example, does your guild host a licensed raffle? Do you have a polished sponsorship packet? Offer your expertise to other guilds.
Don’t know where to begin? Contact the Guild Association and a team member will help you get connected.
Guild Association 2021 Goals
Thank you for all you do to help the Seattle Children’s Guild Association Board of Trustees reach its goals!
Equity, Diversity and Inclusion:
- Develop a three-year strategic plan to achieve significant progress in Equity, Diversity and Inclusion (EDI).
- Align the Guild Association’s Funding Hope Award criteria with Seattle Children’s strategic plan for diversity and health equity.
- Participate in EDI training.
- Recruit guild board trustees and committee members to reflect the diversity of Seattle Children’s patient population.
To learn about Seattle Children’s overall Anti-Racism Organizational Change plan, click here.
Raise $10,100,000 or more!
- Ensure at least 90% of our guild members renew their membership.
- Welcome 40 new lifetime members to the Guild Association.
- Host meaningful and engaging events for guild members throughout the year.
Welcome 70 guild members to Seattle Children’s Guardians’ Circle program.
You Are Simply The Best
Thank you to the more than 100 guild members who participated in the Guild Association’s first ever Virtual Best Practices in March. The event featured expert talks on Why and How to Get Started with Virtual Fundraising, Technology Tips, Audience Engagement and Wrapping Up Your Event. We appreciate the great turnout and continued enthusiasm of our guild members! If you missed the program and would like to see it, we recorded it for you: Click here to watch.
In January, a group of Guild Association board trustees headed by Sherrelle Walker and Kendy Sasaki-Ross launched an ongoing “appreciation squad” in support of Odessa Brown Children’s Clinic (OBCC) staff. When the economic and social impacts of the pandemic took root in spring 2020, the OBCC team immediately anticipated the devastation it would bring to its already challenged patient families — many dependent on front-line jobs.
“The families we serve have been disproportionally negatively impacted by the virus and its effects,” says Arlesia Bailey, senior director of community health and development at OBCC. Staff quickly established mask, phone and food brigades to reach out to all their patients of record, driving hundreds of miles each week to deliver groceries and other necessities to families sheltering at home.
The stress of the pandemic was compounded in November by the departure of beloved longtime senior medical director Dr. Ben Danielson. Board members pooled funds and a small group of trustees has been delivering baskets of goodies and letters of support to OBCC staff each month.
“We want them to know how much they are appreciated and how much we support them,” says Mebie Thompson, chair of the board of trustees.
New & Next Campaign Highlights
Powering Brain Research
One goal of the It Starts With Yes campaign is to develop a much greater understanding of brain disorders, including mitochondrial disease, epilepsy, autism, mental health conditions, brain tumors and brain injuries. 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. Learning how brain disorders originate allows us to develop clinical trials that treat disorders at their source and are customized for each individual child.
Meet Renowned Mito Specialist Dr. Russell Saneto
Families with children diagnosed with mitochondrial disease are fortunate to have one of the country’s leading mitochondrial specialists at Seattle Children’s. Dr. Russell Saneto joined Seattle Children’s in 2001; he is one of fewer than 50 doctors in the country focused on mitochondrial disease and the only one studying pediatric epilepsy associated with mitochondrial disease. His clinical interests include epilepsy, EEG-video telemetry and mitochondrial disorders. Dr. Saneto manages clinical trials for experimental drugs like EPI-743 (see Alex Serex’s story below), which have greatly improved and extended the lives of some mito patients.
The enzyme test described in this newsletter’s cover story is one more step toward fulfilling Dr. Saneto’s dream of creating a Seattle Children’s mitochondrial center for the diagnosis and treatment of patients.
“We want to help our families in more ways than just treating their child’s symptoms,” he says. “We’re fighting to improve treatments for children with mitochondrial diseases to give them a better quality of life and help families be families again.”
“We are proud that finally, through guild support, we can now offer enzyme testing. They funded much of this work — from hiring and paying for the expert in the field to helping develop this testing to the purchase of necessary equipment. We could not have done this without guild support.”
— Dr. Russell Saneto, neurologist, Center for Integrative Brain Research
Seattle Children’s Made a Future Possible for Our Daughter
By Teresa and Steve Serex, members of the Mitochondrial Research Guild
On July 14, 2009, we waited at Seattle Children’s for the results of our baby Alex’s MRI — hoping our fears would be lifted. But the report was grim: “Alex has a progressive brain disease and there is nothing that can be done. Go home and enjoy her.” We experienced deep despair that our daughter did not have long to live.
When Alex was 18 months old, we had a name for her condition, Leigh’s Complex IV, a mitochondrial disease that destroys the brain’s basal ganglia that supports motor development and voluntary movement. Common illnesses are Alexandra’s worst enemy because they fuel her disease. Whenever she runs a fever, we worry that this may be the one that takes her life.
Though her initial prognosis was poor, the caring doctors, nurses and staff at Seattle Children’s have transformed our expectations for Alex from doom to hope. Nine years ago, Alex joined Dr. Russell Saneto’s EPI-743 drug study — the first drug trialed for mitochondrial disease — and it changed her life. Thanks to the amazing care, kindness and treatment from our mitochondrial care team, Alex, who was once a puddle in our laps, became more engaged and interactive, and started using more words. We began to experience her wonderful sense of humor through her laughter and teasing.
Alexandra’s excellent response to the drug boosted our hopes for her quality of life. We know it is not a cure, but her positive reaction to EPI-743 led to more improvements to her life through reconstructive hip surgery at Seattle Children’s when she was 5. With incredible work by Dr. Phil Morgan, the surgery exceeded expectations. Three years ago, Alex started using hearing aids, which has allowed her to greatly expand her vocabulary. Today, she is a bright-eyed, curious 13-year-old full of questions.
Thanks to the extraordinary people at Seattle Children’s and the work of the Mitochondrial Research Guild, Alex has been blessed with exceptional care and given a future. Our family is so grateful to have her in our lives.