Families in the News

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


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