Families in the News

Families affected by ACDMPV have shared their stories and raised awareness through various news outlets as listed below:

Parents of baby who died of rare condition launch campaign to help others
September 3, 2021 – NZ Herald

As Pregnancy and Infant Loss Awareness Month comes to an end, local families left coping with tragedy year-round
October 26, 2020 – KMOV4

St. Charles Co. mom lost her infant and is now on a mission to help other moms and newborns
August 9, 2019 – KMOV4

Ellie Scott: A Gifted Life
June 24, 2019 – The Pulse, Patient Stories

A special showing: Bordentown City opens model train show for boy who defied the odds
December 22, 2018 – Burlington County Times

Dean’s Story: A Happy Baby through the Most Difficult of Times
December 14, 2018 – Media Milwaukee

Two families will benefit from DEC Hands event
November 3, 2017 – Fort Madison Daily Democrat

Baby Lily passes away Friday
October 28, 2017 – Medicine Hat News

Time to let her have some peace
October 27, 2017 – Medicine Hat News

Team Luca 5K Run/Walk to raise money for Ewing child battling deadly disease
October 20, 2017 – Community News

Infant lung transplant recipient battles against a deadly disease
April 28, 2017 – Mercerspace

Luca Palmisano, the nine-month-old in Ewing who defied death
April 9, 2017 – The Trentonian

Rare Disease Day: A Traverse City Family Shares Their Story of Loss
February 28, 2017 – 9&10 News

Remembering Braylee: Family draws attention to rare diseases, support
February 26, 2017 – The Daily Times

Wells Fargo’s Duke Energy Center in Charlotte, NC, USA lit in the colors of the ACDA logo
February 20, 2017

Meet Imogen – Britain’s youngest double lung transplant patient at five-months-old
October 2016 – multiple outlets

Florissant Girl Beats All Odds of Survival; Throws Out First Pitch at Busch Stadium
August 11, 2016 – The Independent News

Couple raises awareness of rare diseases
February 26, 2016 – Lee’s Summit Journal

Family hopes to raise awareness of rare disease
February 24, 2016 – The Leader-Vindicator

Proclamation issued in the State of North Carolina declaring Alveolar Capillary Dysplasia (ACD) Awareness Day
February 20, 2016 – North Carolina Office of the Governor

Paying it forward: Family of double lung transplant recipient ready to give back through new foundation
January 26, 2016 – Lake News Online

Fletcher honoured in Cairns Walk to Remember
September 29, 2015 – The Cairns Post

Spegne la macchina che tiene in vita il figlio neonato: l’addio commuove il web
September 16, 2015 – Today Italy

WATCH: Hartlepool mum tells of final moments with baby Seb
July 23, 2015 – Hartlepool Mail

Heart-rending moment mum kissed her baby goodbye as he died captured on camera
July 23, 2015 – The Mirror

Mother’s Day: Celebrating Amazing Moms in the Rare Disease Community
May 1, 2015 – NORD Blog

Local 12-year-old with double lung transplant meets golfer Erik Compton
April 17, 2015 – News12 WRDW-TV Augusta, GA

Stokesley dad to remember baby son four years on with marathon fundraiser
April 8, 2015 – Gazette Live

Father who lost baby son to rare disorder prepares for fundraising marathon
March 31, 2015 – Darlington & Stockton Times

Mum does half marathon on Mother’s Day in memory of her baby
March 16, 2015 – Northampton Chronicle & Echo

County Executive Steve Bellone Declares October 10th Alveolar Capillary Dysplasia Awareness Day
October 10, 2014 – Suffolk County Government
PDF version here

Taking Action for ACD
October 7, 2014 – NORD Blog

Comfort and love: mom launches Hearts for Hannah crochet group
June 18, 2014 – VictoriaNews

Huntersville mother wants attention for Rare Disease Day, Feb. 28
February 24, 2014 – The Charlotte Observer

Honouring Hannah
January 16, 2014 – VictoriaNews

Apple Holler celebrates great crop, shares with family in need
November 6, 2013 – Fox6 Now

ACD Interview with Gordon Griffin
March 12, 2013 – The Word 100.7 FM radio

Hope’s Rising For Jordan
November 19, 2012 – News Chanel 6 WJBF

New Medical Approach Helps Baby With Rare Disease
July 18, 2012 – St. Louis Children’s Hospital feature

Stokesley couple’s fundraising after baby tragedy
April 7, 2012 – Gazette Live

Grief and joy for one mum on Mother’s Day
March 4, 2012 – ChronicleLive

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