This year’s Congress will provide a platform for a patient voice led discussion, led by the founder of an organisation dedicated to research on preterm birth and supporting those affected by it.
An estimated 15 million preterm babies are born each year globally.
Brittney Crystal, who founded the Iris Fund, alongside partner Jose Aleman, will lead a panel discussion on ‘Nothing about us without us: embedding the patient voice in women's health research’ at this year’s ISUOG World Congress in September. She will be joined by another mother and activist, as well as a midwife and maternal-fetal medicine specialist. This promises to be an eye-opening session, providing perspectives unlike anything ISUOG has hosted at a Congress before.
The Iris Fund was founded in July 2017, just days after they lost their daughter, Iris, in her honour and to help create a brighter future for babies born preterm. Nine years on, the Iris Fund supports life-saving research and drives legislation in the USA that supports families that have endured the loss of a child.
ISUOG spoke to Brittney ahead of her plenary session. She highlighted some of the basic principles of the Iris Fund and what drove her and her husband to build such an organisation from the ground up. She felt she had been left in the dark and had so many questions:
“Every woman deserves to know how their body works, especially at such a critical time like pregnancy.
“I think that in the absence of good knowledge around how our bodies work, every time there is an open question, a mum is going to take that as our fault. Every time we don’t have basic answers, we put it back on ourselves.”
Some key achievements of the Iris Fund so far:
- Led the coalition which drove the passage of the $2,500 Stillbirth Tax Credit in Connecticut in 2022 to provide grieving parents with support.
- Currently in the process of working to roll out clinics supporting families through loss in the USA.
- Invests in basic science research and engineering at Columbia University, where a female-led team of doctors, scientists and engineers, are working to determine the causes of preterm labor by examining the structure and function of the cervix and how it interacts with the uterus.
The purpose of this plenary session is to provide a forum for discussion on how best to support patients, from the viewpoint of those with lived experience. The panel will demonstrate the best practises for MFM specialists, midwives and patients to work together in a way that best supports the mother, baby and family.
“Any solution without a mother at the table is an incomplete one”, said Brittney.
Hear more from Brittney at her plenary session this September.
Find out more about the Iris Fund.