Bev Power

A good person to know and hang out with. Patient expert #CDH , research author, advocator of charity, Yoga Teacher. Loves family, travel and Yoga. Opinions mine

[CDH UK @CDHUK_CHARITY]

#JoininJune4CDH is an awareness campaign set up in 2010 to educate on Congenital Diaphragmatic Hernia (CDH) and to encourage funding for Research.

Each year we choose a different theme or topic to focus on. This year’s theme is individualised care; why it matters and how it can help with transition of care.

The basis of any care plan should be evidence. As far as possible the plan should be standardised, to serve as a bench mark for care and outcomes, BUT as we know with CDH there is no clear phenotype or guaranteed set of co morbidities and so standardising care becomes challenging. Therefore, it is important to look at whole person care and that involves a tailored approach. This plan is commonly referred to as an individualised care plan (ICP). With many years of experience is supporting families, it is our opinion that a robust ICP is a key factor in transitioning children to adult services. It gives both the patient and carer a clear ‘map’ of a person’s health, social and personal needs. This can give a patient a sense of autonomy and ability to cope when issues arise later in life. #cdhawareness

[Bev Power @BevPower4]

Can’t wait to add my decoration to help families ❄️

[CDH UK @CDHUK_CHARITY]

Our 2025 Snowflake appeal is live! Decorate our beautiful tree in honour or memory of a loved one ❄️

https://t.co/nszGlSnADm #cdhuksnowflakeappeal #CDH #snowflakeappeal2025 #cdhuk #cdhuk

[Marian Knight MBE @Marianfknight]

@mbrrace By learning from these women's deaths we will improve care and prevent deaths in the future, which is the positive action to take away from the day. Thank you to all the volunteer midwives, doctors and nurses who have assessed women's care, lay summary writers and @mbrrace staff

[Bev Power @BevPower4]

@NNAP_RCPCH Is this purely for preterm and NEC babies?

[Mattia FM Gerli, PhD @GerliLab]

Our data on the Amniotic Fluid are finally available on the @humancellatlas just in time for the #hca2024gm

Come chat about it at the coffee break!

[Bev Power @BevPower4]

No matter human or animal 🩷

[Bev Power @BevPower4]

Wonderful! Always happy to support and promote these talks 🩷🩵 thank you @LeicChildHosp

[Neonatal Surgery @NeonatalSurgery]

We were honoured to have Mr. Haitham Dagash, paediatric surgeon
@LeicChildHosp give an excellent talk on CDH, ECMO and all the consideration for care, surgery and outcomes.Thank you!!
A few of the 30 that attended f2f and virtually from across the UK @CDHUK_CHARITY @NNAUK1

[Bev Power @BevPower4]

@CDHUK_CHARITY Thank you to Queens University Belfast and @EastwoodPatrice and colleagues from RVI for a special CDH Community Conference! We made lots of new friends and learned new things about patient expectations and priorities #cdh #ccc #qub #cdhuk

[CDH UK @CDHUK_CHARITY]

We had a fantastic day at our CDH Community Conference in Belfast yesterday, with a great turnout of families!
Medical professionals from the RVI and Queen’s University Belfast ran focus groups to obtain patient and family perspectives and gave them the opportunity to engage in research. It is such a positive action to bring families together for peer support and friendship and to be able to showcase the amazing work of CDH UK 🩷🩵

Our next CCC will be announce later this year to take place in 2025.

More pictures to follow from the day tomorrow 🥰

#CDH #cdhcommunityconference #cdhuk #cdhpatientjourney #cdhawareness #support

[Bev Power @BevPower4]

#joininjune4cdh

[CDH UK @CDHUK_CHARITY]

Let's join together on June 28th for #CDHAwarenessDay and spread awareness to raise hope and improve outcomes for individuals living with Congenital Diaphragmatic Hernia and their families. #joininJune4CDH #spreadawareness #raisehope #cdh #cdhawareness

[CDH UK @CDHUK_CHARITY]

Today is the start of CDH Awareness Month! This is an opportunity to collectively draw attention to Congenital Diaphragmatic Hernia and to highlight its impact on patients and their families. It is also a chance to help improve outcomes.

This year’s theme is ‘Family Impact’ and we released our new short information film ‘The CDH Patient Journey’ for you to share earlier this year(see below). We are also releasing our new information booklet ‘CDH and Feeding’ today!

Head to our website is this link to see what you can join in this month to help raise #cdhawareness 👇🏿
https://t.co/C6VMRQ5wTy

https://t.co/GSqvB36qyR

#cdh #joininjune4cdh #awareness

[Bev Power @BevPower4]

😍 #joininjune4cdh

[CDH UK @CDHUK_CHARITY]

#cdhawarenessmonth #joininjune4cdh is nearly here!

What will you do to raise awareness and funds for #cdh 🫶

https://t.co/ZyU2JV85mi

#cdhawareness #awareness #awarenessmonth

[Paolo De Coppi @paolodecoppi]

Great #CDH meeting in #Lille wonderful to share data and learn new things about this challenging conditions @CDHUK_CHARITY @giuseppecala94 @GerliLab and Giorgia D’Ariano @GreatOrmondSt @UCLchildhealth @DBC_ICH @bambinogesu

[Bev Power @BevPower4]

April has been a busy month! @ernica_ern annual meeting presenting on Patient priorities in research and perspectives in signposting and #CDH2024 symposium plus the launch of @CDHUK_CHARITY new information short film 😀 #cdh #ideaalliance

[Bev Power @BevPower4]

@RCPCHtweets @asthmalunguk This is very important for our patient community #cdh

[RCPCH @RCPCHtweets]

Every winter we see our services at breaking point due to illnesses caused by viruses such as RSV. An RSV vaccination programme could be transformative.

We need your help to persuade the UK Government to make this a reality.

Sign our open letter today! https://t.co/jLHs6L2NS5

[Bev Power @BevPower4]

@NeonatalSurgery @NNAUK1 @hannahwellsNHS Is this open to all stakeholders?

[CDH UK @CDHUK_CHARITY]

We are extremely excited by this research that we supported and of the potential it has to change diagnostic techniques and methods to improve prognosis and outcomes for patients and their families. It is vital that organisations like ours are involved because of the ethical and prognostic factors that new and innovative research can pose and so we are extremely proud to be involved. #cdh #research #cdhuk #MakingADifference #Donate #patientvoice

[Paolo De Coppi @paolodecoppi]

Thrilled to share that our article on primary organoids derivation from human amniotic and tracheal fluids, is now out on @NatureMedicine

We present the first atlas of the unperturbed human amniotic fluid cells, containing epithelial progenitors of fetal small intestine, kidney and lung. Culturing these cells in 3D, our innovative low-tech/low-cost method, allowed generation of primary fetal organoids of multiple tissues from continuing pregnancies.

Curious? Dive into the full article: https://t.co/xVSclPmIlm

@GerliLab @giuseppecala94 @MaxABeesley @GiobbeGiovanni and all our fantastic collaborators!

@ucl @UCLchildhealth @UCLDivofSurgery @GreatOrmondSt @KU_Leuven @TheCrick @WEISS_UCL @UCL_IfWH @Tigem_Telethon @humancellatlas

This work would not have been possible without the support of: @NIHRresearch @MSCActions @UCLTRO @GOSHCharity @Kidney_Research @CDHUK_CHARITY @wellcometrust @EPSRC @Royalacademyof @ArmeniseHarvard @MinisteroSalute @MonashScholars @longfonds @oakfnd @DiamondLightSou

#PrenatalMedicine #RegenerativeMedicine #FetalDevelopment #MedicalAdvancements #BiomedicalResearch #FetalHealth #MedTech #PrenatalScreening #InnovationsInHealthcare #MedicalBreakthroughs #HDBR #AFO #TFO #AmnioticFluidOrganoids

[Bev Power @BevPower4]

@StephenHearns1 @easyJet First thing I was taught in nursing training. Can still remember how to do it, but can never remember which is systolic and which is diastolic!