ACDA
@ACDAssociation
Followers
298
Following
555
Media
36
Statuses
1K
We are a group of parents throughout the world who have had a child with Alveolar Capillary Dysplasia (ACD).
Joined February 2012
It’s rare disease day on Thur 29th Feb Please support our charity & wear jeans (or blue) to school or work raising awareness of rare diseases & heping us fundraise for research into this rare disease that took our newborn baby David. 👖💙 https://t.co/ITuZPKiy1t
0
1
3
#waveoflight2023 remembering David & too many precious babies taken too soon #babylossawareness
#raredisease
@ACDAssociation
0
1
7
Tomorrow morning I will be chatting to Antony on the amazing #localradio @BBCTees 📻 Talking about #rarediseaseday2023 & what our small charity @TDavidAshwellF does to raise funds & awareness for #ACD #research @ACDAssociation
Looking forward to speaking to Antony tomorrow morning on @BBCTees about our small charity in memory of our son David & #rarediseaseday2023
https://t.co/LTRBarehE1
0
4
11
Why am I wearing “jeans” today? (technically, a Jean dress!). And on a BOE meeting night? Because of my niece Phoebe & nephew Ronan, gone too soon due to the rare disease @ACDAssociation @TDavidAshwellF @RareDiseases @RareDayUS #always #jeansforgenes #RareDiseaseDay2022 #miched
1
3
9
They’ve got their 👖 on! Raising money & awareness on #RareDiseaseDay for #ACD in memory of their big brother David. #jeansforgenes #ForDavid
@ACDAssociation (Yes that’s a cricket bat 🏏 😵💫)
0
1
6
In the UK @Lakenutrition is talking to children today about #RareDiseaseDay & #ACD Amelia runs @TDavidAshwellF in memory of baby David who had ACD Schools are supporting us by wearing 👖 for genes! https://t.co/keliAYKqVU
1
2
3
This group received a grant fundraised by families like us around the world who lost their baby to a deadly #raredisease #ACDMPV It’s incredible to see the science progress at this rate
Read more about an exciting application of #nanoparticle technology that improved survival in mice w/rare newborn disease. #ACDMPV #rarediseas Post: https://t.co/zewtlUpHfv Study @CircAHA : https://t.co/RLLZkhkRRC
@CincyKidsHeart @CincyKidsGenomX @UCHealthNews @RareDiseases
0
0
2
This group received a grant fundraised by families like us who lost their baby to a deadly #raredisease #ACDMPV Overwhelmed to see the science moving towards a treatment for this fatal disease that affected our son David @ACDAssociation
Read more about an exciting application of #nanoparticle technology that improved survival in mice w/rare newborn disease. #ACDMPV #rarediseas Post: https://t.co/zewtlUpHfv Study @CircAHA : https://t.co/RLLZkhkRRC
@CincyKidsHeart @CincyKidsGenomX @UCHealthNews @RareDiseases
0
1
3
Thinking of so many incredible mothers I know who have experienced the loss of a child or children 🦋 #babyloss #ACDC (Image from @ACDAssociation)
0
1
5
Ten years today since our eldest baby boy David died aged 15 days Ten years of trying to raise awareness & funds in his memory through this charity & @ACDAssociation for #ACD #Research This year, I’ve run every day for the 15days of his turbulent life
1
1
5
One of our UK families #10forDavid
Approaching my son's 10th birthday and anniversary of his death and asking you to do #10forDavid to help us #fundraise for much needed #research into #ACD the #raredisease that affected him. #babyloss @TDavidAshwellF
0
0
1
Our amazing president Eliza has put this together for this year’s #BabyLossAwarenessWeek
#Grief is.... https://t.co/ytRld20wn9
#WaveOfLight
#ACDAWaveOfLight
1
1
3
Perfect 🌈 this morning in school run for #BabyLossAwarenessWeek #ForDavid💙 @ACDAssociation #acd #RareDisease
0
3
4
Little Imogen has the same #raredisease (ACD) as our son David. Imogen is unusual in that she’s a survivor & youngest lung #transplant recipient in UK This week she started school! Incredible ❤️ @TDavidAshwellF @roselock22
theargus.co.uk
A LITTLE girl who was the youngest person in the UK to receive a bilateral lung transplant as a baby has celebrated her first day at school.
0
0
4
Our charity along with @ACDAssociation has awarded a #research study into #ACD through @RareDiseases #ThankYou for all your fundraising contributions 💙#ForDavid
https://t.co/iV6qjlsDo6
rarediseases.org
Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program,
0
1
4
Our small UK #charity @TDavidAshwellF along with @ACDAssociation has funded a new research grant through @RareDiseases into #ACD ACD is a #raredisease affecting #newborns and took our eldest son David aged only 15 days https://t.co/KQaVGp3YMq
rarediseases.org
Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program,
2
9
20
Love you & miss you always my precious boy - 9 years & I ache for you today as much as I did the last time I kissed you goodnight - love from your mummy xxx #ForDavid #raredisease #ACD @ACDAssociation
1
1
4
The #ACD families from around the world are so grateful to you all! Thank you! #RareDiseaseDay #TDAF
Today at school...we are wearing jeans in Pre-Prep @HandcrossPark to raise money for #RareDiseaseDay @TDavidAshwellF #TalesofHXP #HXPSecretGarden
0
0
0