September 24, 2019

After undergoing a tracheostomy, Brenda Gregg shares how her journey strengthened her determination to reach her goals, and how this experience has impacted the way she cares for patients with similar health challenges. Read more

September 16, 2019

The Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital recently hosted the first-ever family conference for EBF3-HADD (Hypotonia, ataxia and delayed development) syndrome (HADDS). Medical residents, genetics counseling students and research scientists joined more than 20 families from across North America that attended in person and 13 families that participated via live-streaming services from countries around the world – including Ireland and Australia – making it a truly international event.

The conference was organized by the EBF3-HADDS Foundation, a nonprofit organization created in 2018 by families to promote awareness, research and support for this genetic syndrome. The foundation was co-founded by Ashley LeMaire and her husband, Mark. After one of their children was diagnosed with HADDS in 2016, the LeMaires started a Facebook group for HADDS families. In just two years, that group has grown into an international community and was the impetus behind the foundation’s creation.

“Our HADDS community is a motivated and talented group of families dedicated to supporting research, education and advocacy efforts for HADDS patients, and we support each other on this journey,” said LeMaire, who is a clinical neuropsychologist at the Menninger Clinic, assistant professor of Psychiatry & Behavioral Sciences at Baylor College of Medicine, and also board member of the EBF3-HADDS Foundation. “There is still much to learn about HADDS, but when you have such a dedicated team of physicians and researchers collaborating with families to learn about the condition and provide needed support, it fosters so much hope for our families.”

During the conference, guests attended presentations on a variety of HADDS-related topics given by NRI researchers Drs. Hsiao-Tuan Chao and Michael Wangler; pediatric urologist Dr. Irina Stanasel, a former Texas Children’s fellow; Texas Children’s genetic counselor Pilar Magoulas; and Geraldine Bliss, research director of the Phelan-McDermid Foundation. Additionally, Chao and Wangler offered clinical evaluations for patients, and attendees were also able to tour research labs and facilities at the NRI, where one of the first genetic discoveries for HADDS was made in 2016, and the first lab (Chao’s) devoted to understanding the biology of this disorder.

A search for answers

If you’ve never heard of HADDS, there’s a good reason. The rare genetic disorder, caused by a mutation in the EBF3 gene, was only discovered in 2016 by Chao and Wangler when they were training in NRI investigator Dr. Hugo Bellen’s lab, in collaboration with colleagues at the Undiagnosed Diseases Network (UDN) and New York University Langone Health.

The UDN had been stumped by a case in which a child exhibited symptoms including impaired speech and cognition, low muscle tone, balance and gait issues, reduced ability to feel physical pain, and an inability to show facial emotional expressions. Though earlier DNA sequencing had yielded a few candidate genes, there wasn’t a significant patient cohort or research to help determine which gene was responsible for the symptoms.

Researchers selected EBF3 as the most likely candidate gene. Chao then used fruit flies to mimic mutations to better understand EBF3’s role, and within a few months three patients were found who presented with similar symptoms and similar mutations in the EBF3 gene.

As result of those efforts, more than 200 patients with HADDS have been identified to date.

“The gene discovery of EBF3 illustrates the ‘Power of One’ in medicine and biomedical research, how a single patient with an undiagnosed disorder – a ‘medical mystery’ – can lead to the discovery of a gene responsible for a previously unknown disorder,” Chao said. “This becomes the starting point to develop the diagnostic tests and therapies that can transform the lives of many patients and their families.”

Since 2017 Chao and Wangler have offered monthly clinical evaluations for HADDS patients at Texas Children’s and have now seen the largest number of such patients at any single institution worldwide. They are also enrolling patients in a study to better understand the condition and to help translate research into potential clinical interventions in the future.

The conference was a testament to the power of teamwork and collaboration in research, and also shows how dedicated parents and volunteers from across the globe can work together to build a community of support.

Houston is both the home of significant chemical processing operations and an identified target for terrorism by Homeland Security. As such, Texas Children’s MUST be prepared to provide decontamination for victims of an accidental or intentional release of chemicals in the Houston area.

During September 30 to October 4, “Decon Week” will be held at Texas Children’s Hospital. The department of Organizational Resilience will host a series of Occupational Safety and Health Administration (OSHA) approved decontamination trainings for Texas Children’s staff. These will include an 8-hour first receiver training and a 4-hour awareness training at Texas Children’s Medical Center Campus, Texas Children’s Hospital West Campus and Texas Children’s Hospital The Woodlands.

The 8-hour training is for staff interested in becoming members of the decontamination or “Decon” team. This team is made up of volunteer staff members who attend the annual training, bi-annual meetings, and also participate in an annual decontamination exercise (to be held the last half of October 2019). Both operational and support members are needed on the team.

The team plays a vital role in protecting the safety and security of patients, visitors, and staff by performing decontamination activities prior to entry into our facilities. Further, the decontamination process helps the victim by limiting exposure to the contaminant on their skin and clothing.

The 4-hour awareness training is meant for Emergency Center and Urgent Care Nursing, and other staff who may encounter a “one off” contamination that occurred at a home, school, or industrial setting. These staff are trained to identify potentially contaminated patients, and direct them outside to our built-in decontamination showers (or outdoor decon area at Urgent Cares) to receive instruction to conduct “self-decon” before entering the facility.

Any staff interested in joining the decontamination team and attending the 8-hour training, or staff interested in the 4-hour awareness training, should contact Emergency Management at ext. 4-1237 or use the link below to sign up for a training and exercise that are convenient to their schedule.

Emergency Management Event Sign Up

September 10, 2019

Cancer survivor Sophia Sereni took center stage last week at one of the three Going Gold celebrations held at Texas Children’s hospitals in honor of National Childhood Cancer Awareness month.

Standing before a packed conference room in the Pavilion for Women, the curly-haired teen sang “Be Golden,” a gentle but strong song she wrote with Purple Songs Can Fly following treatment for T-cell acute lymphoblastic leukemia at Texas Children’s Cancer Center. Click here to listen to the full song.

“This has been an amazing experience,” Sophia said. “I’m so glad I could be part of such an important cause.”

Following Sophia’s performance and dressed in bright gold shirts and other festive gear, fellow survivors, current patients, families, Texas Children’s Cancer Center employees and others marched for childhood cancer awareness, ending their short trek on The Auxiliary Bridge where they participated in a ribbon tying event and received information from various support organizations.

View photos from the events below.

Sponsored by The Faris Foundation, similar events and parades were held last week at Texas Children’s Hospital West Campus and Texas Children’s Hospital The Woodlands. A celebration will be held this week at Vannie Cook Children’s Cancer and Hematology Clinic in McAllen, Texas.

“Each year, the events get bigger and better,” said Asha Virani, founder of The Faris Foundation and the mother of Faris D. Virani, who lost his battle with Ewing sarcoma and inspired Texas Children’s to “Go Gold.” “It’s a golden opportunity to spread awareness and love. Texas Children’s has been a leader in making this cause so visible.”

Khole Henry, an 8-year-old cancer patient, said she attended the event last year and was so excited to hear that it was going to happen again this year.

“My favorite part is the snacks!” Khole beamed as she grabbed a couple of bite-sized bags of M&Ms for later. “I’m glad I got to come.”

Director of Texas Children’s Cancer and Hematology Centers Dr. Susan Blaney said she is glad so many people turned out to raise awareness for such an important cause and that even though great strides have been made in combatting childhood cancer, there is still work to be done.

“We need a cure for every child diagnosed with cancer,” Blaney said. “That’s why we have to keep doing laboratory and clinical research, keep developing novel treatment approaches and continue raising awareness about childhood cancer.”

Last year alone, almost 600 children were diagnosed with cancer at Texas Children’s. The disease remains the leading cause of non-accidental death in children. Help spread the word that pediatric cancer is a serious disease and that Texas Children’s Cancer Center is here to help. For more information about the Cancer Center, click here.

Click here to view a preview of the next installment of “This is Cancer: Reflections from our patients.” This installment focuses on Owen, who was barely 2 years old when doctors found a mass the size of a grapefruit surrounding his heart and cutting off his airway. Since then, his tiny body has been through a lot. But, as his mom Emily says, not even cancer can slow this energetic toddler down. The “This is Cancer” series documents the journeys of several families receiving care at Texas Children’s Cancer and Hematology Center. Their stories illustrate in intimate detail what they’re experiencing and how to better support them. Click here to learn more.

Aaron Mansfield shares how a mobile end-of-treatment bell that he designed and built is helping our cancer patients and their families celebrate this memorable milestone in their cancer journey. Read more

Hyundai Hope On Wheels (HHOW) dedicated half a million dollars in Hyundai Young Investigator and Scholar Hope awards last week to Texas Children’s Cancer and Hematology Centers to help Texas Children’s continue its long-standing fight against pediatric cancer.

HHOW, a non-profit organization supported by Hyundai and its U.S. dealers, has committed $13.2 million to support 52 physician-researchers across the nation in their research for better treatment options and to improve care for children diagnosed with pediatric cancer.

The Hyundai Young Investigator and Scholar Hope Grants dedicated to Texas Children’s were presented on September 6 to Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers, during a Handprint Ceremony.

The awards will support the research of Drs. Sarah Injac and Alison Bertuch. Bertuch, director of the Cancer Center’s Bone Marrow Failure Program, is studying the role of DNA repair defects in leukemia predisposition in the Ribosomopathy Shwachman-Diamond Syndrome. Injac, a Cancer Center physician-scientist, is conducting research on medulloblastoma, the most common malignant brain tumor in children. To read more about their work, click here.

“Research is vital to our continued fight against cancer,” Blaney said. “We appreciate the continuous support provided by Hyundai Hope On Wheels gives, which allows us to continue our efforts, without interruption, to find a cure for all pediatric cancers.”

During the ceremony, children who are battling cancer at Texas Children’s dipped their hands in paint and placed their handprints on a white 2019 Hyundai Santa Fe. Their colorful handprints on the official Hope Vehicle represent their individual and collective journeys, hopes and dreams.

“For 21 years, Hyundai and its dealers have partnered with physician scientist research teams from the top hospitals and institutions around the country in a quest to finally beat this disease,” says Scott Fink, Board Chair and Hyundai dealer owner, Hyundai of New Port Richey. “Hyundai’s contributions have helped to significantly improve childhood cancer cure rates to more than 80 percent. This is why every minute is precious and every second matters in the fight against pediatric cancer.”

HHOW remains one of the largest foundations in the nation to support medical institutions and efforts to support cutting edge pediatric cancer research. This year will reach $160 million in total lifetime funding since 1998 towards finding a cure. With this latest award, Texas Children’s has received $3.3M since 2008 from HHOW.

For more information about Hyundai Hope On Wheels and to view a list of our 2019 Hope On Wheels grant winners, please visit www.hyundaihopeonwheels.org/research.

September 4, 2019

Each year in September, Texas Children’s Cancer Center goes gold to honor the courageous journeys of our patients and families who have been touched by pediatric cancer and to create awareness about the challenges these children and their loved ones face. It is also a special time to honor the Cancer Center’s staff and everyone involved in the care and support of our patients.

Today, you will get a sneak peek of what’s to come this month, including the launch of a video series called “This is Cancer: Reflections from our patients.” The series documents the journeys of several families receiving care at Texas Children’s Cancer and Hematology Center. Their stories illustrate in intimate detail what they’re experiencing and how to better support them.

In addition to this series, there are several events scheduled across the organization geared toward raising awareness about childhood cancer. Some of those event are listed below. Please check the Connect calendar and the Cancer Center’s Facebook page for additional details. Also, visit the Texas Children’s Blog for Cancer Center related posts throughout the month.

“We are proud to say that our Cancer Center helps children fight and defeat cancer every day,” said Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers. “We hope you will stand with us in Going Gold for childhood cancer, so that together, we can continue to work on finding a cure for childhood cancer.”

Upcoming cancer awareness activities:

  • September 2-9 – McGovern Commons Water Wall will be lit gold in honor of National Childhood Cancer Awareness Month
  • September 3 at 1 p.m. – West Campus Going Gold Parade and Ribbon Tying Event in the hospital’s main lobby
  • September 4 at 10:30 a.m. – Main Campus Going Gold Parade and Ribbon Tying Event starting on fourth floor of the Pavilion for Women and ending on The Auxiliary Bridge
  • September 5 at 1 p.m. – The Woodlands Going Gold Parade and Ribbon Tying Event in the hospital’s main lobby
  • September 5 at 6 p.m. – Vannie Cook Children’s Clinic in McAllen Going Gold Parade and Ribbon Tying Event
  • September 6 at 10 a.m. – The annual Hyundai Hope on Wheels Tour will stop at Texas Children’s in support of research and programs that bring us closer to better treatment and possible cures to cancer. The tour is a united effort of Hyundai dealers who travel the country to present Hyundai Scholar grants to children’s hospitals.
  • September 7 at 2 p.m. – The opening of and reception for the Periwinkle Foundation’s Making A Mark exhibit on The Auxiliary Bridge. The exhibit, which highlights the art and creative writing by children touched by cancer and blood disorders at Texas Children’s Cancer and Hematology Centers, will be on the bridge throughout the month.
  • September 21-22 – Houston City Hall and the Montrose bridges across Southwest Freeway will be lit gold in honor of National Cancer Awareness Month.

To learn more about Texas Children’s Cancer Center, click here.