Rare Disease Day: February 28, 2018

Update on Rare Disease Day 2018:

We are pleased to announce $4,219.32 was raised by the ACDA and an additional £1,026 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,631 in connection with Rare Disease Day on February 28, 2018!!  Our sincerest thanks to the families, friends, colleagues and classmates of the ACDA and The David Ashwell Foundation for raising such an incredible amount for ACD research!

In the U.S., we would like to give our very special thanks to Lee County Bank (Fort Madison, IA), Family Design Resources (Harrisburg, PA), Discover Little Miracles (St. Michael, MN), East Quogue Teachers Association (East Quogue, NY), East Quogue Elementary School, (East Quogue, NY), The Suffolk County District Attorney, Economic Crime & Cyber Crimes Bureau (Hauppauge, NY), Suffolk County Department of Law & Suffolk County Office of Risk Management (Hauppauge, NY), Suffolk County Office for the Aging (Hauppauge, NY), Suffolk County Budget Office & Suffolk County Federal & State Aid Unit (Hauppauge, NY) and Suffolk County Department of Audit & Control & Suffolk County Office of Administration (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Teesside University, Human Nutrition Research Centre, Newcastle University, Appleton Wiske School, Kirby Great Broughton school, Lewes priory school, Moulscoomb primary school and Hertford infants school.

We would like to thank all of our individual donors and everyone who wore #JeansForGenes or sent pictures wearing the ACDA logo! Thank you for your outstanding support of our ACDA families.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2018!

Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (be sure to visit the ACDA store if you would like to purchase any gear)!

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Below are flyers used by our ACDA families at their workplace that encouraged employees to donate $5 / £5 / €5 to the ACDA to wear jeans to work on Wednesday, February 28 for Rare Disease Day. #JeansForGenes

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!


Update (February 28, 2018, 11:59 p.m. EST):  As #RareDiseaseDay 2018 draws to a close, we would like to give our sincere thanks to our ACDA community, including generous donations made this evening in honor of Hannah, Amelia Lee, Dawson and Chelsea. It has truly been a fantastic day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2018! The funds will be contributed to ACD research grants and supports the efforts of the medical community to find the cause of and cure for ACD. If you missed today but would like to contribute, please visit our website here at any time – https://acdassociation.org/donate/

Searching for answers…hoping for a cure.



Update (February 28, 2018, 7:00 p.m. EST): 
Thank you for the additional generous donations in honor of Dean, Joseph, Myla, David, Phoebe, Ronan, Imogen, Avery and Fraser! The donations are flowing in and the day is not over yet if you would like to make a donation to find the cause of and cure for ACD in honor of a loved one. Look for another follow-up post recognizing tribute donations received this evening! Thank you for your continued support on #RareDiseaseDay 2018!



Update (February 28, 2018, 2:00 p.m. EST):
Thank you for the generous donations so far today in honor of Callie, Valerie, Fallon, Annabelle, Sadie and Johnny! #RareDiseaseDay is our final push towards funding a 2018 grant for ACD research, to be awarded and announced later this year. Please help us cross the finish line! Look for additional follow-up posts recognizing tribute donations made throughout the day. As always, thank you for your support!



Update (February 28, 2018, 12:01 a.m. EST)
: It’s here! Today, February 28, is Rare Disease Day! In addition to spreading awareness about ACD, today also marks one of the ACDA’s biggest fundraising days of the year and your support matters.

We will be showcasing donations made today in tribute of a loved one with a special “Rare Disease Day” recognition image featuring the child’s name. The ACDA will also send a card to the honoree’s family acknowledging your gift. When you give in honor or in memory of someone special, you also support our mission of finding the cause of and cure for ACD.

Today is a great day to wear your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please post a picture in the comments below! We will compile all the pictures into a slideshow for our website.

Numerous organizations and schools around the world are participating in our #JeansForGenes campaign to wear jeans to work or school with a donation. Other ways to participate include visiting our ACDA store linked below or simply inviting your friends and family to “Like” our Facebook page.

We look forward to a meaningful day in honor of all the babies and children gone too soon or affected by ACD. Thank you for your continued support of our very important mission! #RareDiseaseDay, #ShowYourRare, #WRDD2018, #ACD, #ACDMPV

The ACDA is a 501(c)(3) non-profit, tax-exempt organization as designated by the Internal Revenue Code of the United States. If you would like to help fund research into ACD, please donate here: https://acdassociation.org/donate/

If you live in the UK or elsewhere in Europe, you can also make a donation directly to our sister organization, The David Ashwell Foundation, here: https://uk.virginmoneygiving.com/…/finalCharityHomepage.act…

ACDA store: https://shop.spreadshirt.com/ACDAssociation
ACDA Facebook: http://www.facebook.com/ACD.Association
ACDA Twitter: http://twitter.com/acdassociation
ACDA website: https://acdassociation.org/

Rare Disease Day Donate for FB (2018) 1200 x 628


Update (February 21, 2018): Only one week until Rare Disease Day! Please visit our website to learn about different ways you can participate in Rare Disease Day for the ACDA, including flyers to print for our $5 “Wear Jeans to Work” day on February 28 and links to #ShowYourRare profile frames! It’s not too late for the ACDA to create a special “Wear Jeans to Work” day flyer personalized with your child’s name if you would like to organize the event at your workplace. Please send us a message, leave a comment or email (president@acdassociation.org) if you would like to request a customized flyer for distribution. Rare Disease Day is one of the ACDA’s biggest fundraisers during the year and we need your help to continue funding annual ACD research grants! THANK YOU!



Original Post (February 3, 2018):

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2018. The ACDA has signed on once again to partner with NORD to support this awareness campaign and we encourage everyone to participate in some way. Click to see how the ACDA supported Rare Disease Day in 2017 and 2016!

Click HERE for ways to participate in the U.S. in 2018 and click HERE to visit the EURORDIS website for Rare Disease Day 2018 in Europe.

Below are a few suggested ideas:

  • Click HERE ($), HERE (£) or HERE (€) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 / €5 to the ACDA and wear jeans to work on Wednesday, February 28 for Rare Disease Day. #JeansForGenes
  • Join a social media “rare disease day” campaign by changing your profile and cover pictures to share the importance of rare disease awareness! Click HERE to upload a photo and show how much you care about rare! Use the hashtags #RareDiseaseDay, #ShowYourRare, #WRDD2018#ACD, #ACDMPV
  • Organize a fundraiser to raise money for the next ACDMPV research grant.
  • Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.

Families in the News

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


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


Rare Disease Day: February 28, 2017

Update on Rare Disease Day 2017:

We are pleased to announce $2,900 was raised by the ACDA and an additional £1,741 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,016 in connection with Rare Disease Day on February 28, 2017!! Our sincerest thanks to the families, friends, colleagues and classmates of the ACDA and The David Ashwell Foundation for raising such an incredible amount for ACD research!

In the U.S., we would like to give our very special thanks to Moore & Van Allen PLLC (Charlotte, NC), Family Design Resources (Harrisburg, PA), Little Treasures Learning Center (Grove City, PA), The Smithtown Library (Nesconset, NY), East Quogue Union Free School District (East Quogue, NY), Suffolk County District Attorney, Economic Crime Bureau (Hauppauge, NY), Suffolk County Attorney’s Office (Hauppauge, NY), Suffolk County Office for the Aging (Hauppauge, NY) and Children’s Choice Childcare, Inc. (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Brighton & Hove Albion FC, Moulscoomb primary school, Lewes priory school, Durham University (various schools & central services), Newcastle University Institute of Health & Society, Skerne Medical group, Runway East, Kirby Great Broughton school, Yarm primary and Unforgettable™.

We would also like to thank all of our individual donors and anyone who wore #JeansForGenes or sent pictures wearing the ACDA logo! Thank you for your outstanding support of our ACDA families.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2017!

Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (note, you can use coupon code “STPADDY17” for 15% off your entire order March 3 – March 8, 2017 in the ACDA store)!

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Please read the following two articles published recently about two of our ACDA families in connection with Rare Disease Day 2017:

Below are flyers for anyone to use at their workplace that encourages employees to donate $5 / £5 to the ACDA and wear jeans to work on February 28 as part of Rare Disease Day. Several of our ACDA families asked their workplaces and schools to join this effort to raise awareness of ACDMPV!

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!


A letter to our followers on Rare Disease Day 2017:

What does it mean to be rare? In the case of ACDMPV, it means you are one of only a few hundred children worldwide formally diagnosed with ACDMPV since first identified in 1948. By contrast, the U.S. National Institutes of Health (NIH) considers a disease rare if it has a prevalence of fewer than 200,000 affected individuals in the United States. Taking a moment to reflect on those numbers, you realize how rare ACDMPV is even within the subset of rare diseases. And yet, this very rare disease often feels a little less rare due to the compassion, generosity and support of our ACDA families and friends.

On this Rare Disease Day 2017, we are stopping to thank our ACDA families and friends for listening, learning, sharing and always remembering our children who are no longer with us or faced uncertain futures due to this very rare disease. We thank everyone who has ever ‘Liked’ our Facebook page, wore #JeansforGenes, donated funds for ACDMPV research, dressed in a shirt with the ACDA logo, organized a fundraiser, used the designated hashtags #RareDiseaseDay #WRDD2017 or shared an ACDA link. We also thank anyone who has ever sent a hug or love on those difficult days, spoken our child’s name on an ongoing basis, held our hand through an anxious rainbow pregnancy or any of the other innumerable ways you have shown your support. Our list could go on forever in so many ways.

If there is one glimmer of light in the reason that unfortunately brought all of us together, it is that the ACDA community itself is also rare. Not just because of the statistical numbers, but because our ACDA families and friends are unusually remarkable.


Original Post:

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2017. The ACDA has signed on once again to partner with NORD to support this awareness campaign and we encourage everyone to participate in some way. Click HERE to see how the ACDA supported Rare Disease Day in 2016!

Click HERE for ways to participate in the U.S. in 2017 and click HERE to visit the EURORDIS website for Rare Disease Day 2017 in Europe.

Below are a few suggested ideas:

  • Click HERE ($) or HERE (£) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 to the ACDA and wear jeans to work on Tuesday, February 28 for Rare Disease Day. #JeansForGenes
  • Join a social media “rare disease day” campaign by changing your profile and cover pictures to share the importance of rare disease awareness! Click HERE to upload a photo and show how much you care about rare! Use the hashtags #RareDiseaseDay and #WRDD2017
  • Organize a fundraiser to raise money for the next ACDMPV research grant.
  • Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.

A look back at 2016:

  • Twenty new families registered with the ACDA. These families are from the USA, UK, Netherlands, Germany, Philippines and Canada.
  • Two lung transplants; one in the UK and one in the USA.
  • Three confirmed prenatal diagnoses of ACD without a family history.
  • One NORD research grant in the amount of $50,000.
  • Thirteen rainbow babies born to ACDA registered families.
  • Two tattoos of the ACDA logo.
  • More than ten journal articles published about ACD.
  • Numerous successful fundraisers for ACD research and awareness events.
  • One continued goal – To find the cause of and cure for ACD.

NIH Grant Announcement

May 31, 2017 – It is the great pleasure of the ACDA to announce Baylor College of Medicine in Houston, Texas, USA was recently awarded a NIH R01 grant in the amount of $1,952,000 for ACDMPV research over the course of four years. This multi-year study at Baylor hopes to explain how enhancers in chromosome 16q24.1, including long noncoding RNAs (lncRNAs), regulate expression of the FOXF1 gene responsible for ACDMPV. Baylor will study the role of lncRNAs in genomic imprinting of the FOXF1 locus and will also study the function of a specific lncRNA in the development of lungs and other organs. LncRNAs are considered promising therapeutic targets and Baylor believes that by manipulating their expression, we may have the potential to correct the lethal phenotype of ACDMPV in the future.

The ACDA extends our heartfelt thanks to Dr. Pawel Stankiewicz (Project Leader for the 2017 NIH grant) and Dr. Przemyslaw Szafranski at Baylor College of Medicine for their tireless efforts to secure substantial NIH funding. As background, R01 grants from the NIH are highly competitive and are known as the gold standard due to it being one of the most respected mechanisms of financial support in the medical research world.

Please join us in publicizing this tremendous and significant news by sharing this announcement. We look forward to providing updates on the results of the research through this NIH grant as we continue our steadfast mission to find the cause of and cure for ACDMPV.

None of this would be possible without the ongoing seed grants raised by families and friends affected by ACDMPV. Among other objectives, prior seed grants have helped Baylor to accumulate and maintain the largest collection of DNA and tissue samples related to ACDMPV in the world and to detect mutations and deletions therein. The smaller seed grants (approx $50,000) issued each of the past few years through money raised by ACD families and friends have helped collect data for use in this larger multi-year government grant, which was the exact purpose of those seed grants. We will continue to focus on annual seed grants to investigate ACDMPV from all perspectives, including genetic, biological, clinical, pathology, etc. Our thanks, always, to the numerous individuals and organizations who continue to support our very important mission from the ground up.

Rare Disease Day: February 29, 2016

Update on Rare Disease Day 2016:

We are pleased to announce more than $1,200 was raised by families and friends of the ACDA in connection with Rare Disease Day on February 29, 2016!! We would like to give our special thanks to the employees of Suffolk County District Attorney’s Office (New York), Smithtown Library (New York), Family Design Resources (Pennsylvania), Mercer County Children and Youth Services (Pennsylvania) and Pleasant Lea Elementary (Missouri) for their outstanding support of our ACDA families. We would also like to thank all of our individual donors, those who sent pictures featuring the ACDA logo, wore #JeansForGenes and those who participated in our #Reach1000Likes campaign!


Please see below for ways that ACDA families supported Rare Disease Day in 2016!

Check out friends and family wearing or using items featuring the ACDA logo purchased through the ACDA store! Use coupon code “Spring16” for 15% off your entire order through March 2nd, 2016.

This slideshow requires JavaScript.

Please read the following two articles published recently about two of our ACDA families in connection with Rare Disease Day:

Below is a flyer for anyone to use at their workplace that encourages employees to donate $5 to the ACDA and wear jeans to work on February 29 as part of Rare Disease Day. Several of our ACDA families asked their workplace to join this effort to raise awareness of ACD!

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to secretary@acdassociation.org. We look forward to hearing from you!


Original Post:

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 29 in 2016. The ACDA has signed on once again to partner with NORD to support this awareness campaign. Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way. Click HERE for a full list of ways to participate in the United States and click HERE to visit the EURORDIS Global Rare Disease Day website!

Below are a few suggested ideas:

  • Join a social media “rare disease day” campaign by changing your profile and cover pictures to share the importance of rare disease awareness! Click HERE to upload a photo and show how much you care about rare! #RDD2016 and #RareDiseaseDay
  • Organize a fundraiser to raise money for the next ACD research grant! The deadline is March 1, 2016 so a fundraising drive in February pairs perfectly with Rare Disease Day.
  • Purchase t-shirts or other items featuring the ACDA logo by clicking HERE to shop in our Spreadshirt store.
  • Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.

Coffee Fundraiser

The ACDA is pleased to announce an ongoing fundraiser through Giving Bean! Thank you to Renee Murray, ACDA mom to Callie (May 15, 2015 – May 23, 2015), for coordinating this drive. Please see her message below:

“Hi all! The ACDA asked me to launch the Giving Bean fundraiser… I’m so excited to share with you this fundraising opportunity for those of us who live in the United States. We hope to include our international families in the future if Giving Bean expands to ship internationally (they assured me they will be working on it).

Listed below are the details…

Giving Bean is a gourmet coffee roaster providing a variety of freshly roasted whole bean and ground coffees, fine tea, gourmet cocoa, chai, and biscotti.

•All coffee is roasted-to-order and arrives fresh, assuring its great taste.
•Prices are $12 per bag of coffee and tea, comparable to other high quality coffees and teas. We will earn 25% for every item sold!
•Included in the package will be a paper stating, “Thank you for supporting the Alveolar Capillary Dysplasia Association.”

So many of us are looking for gift ideas for family, friends, teachers, coaches, etc. Why not give the gift of coffee or tea?!

Please share this link (http://www.givingbean.com/store/home.php?partner=4005f) with your friends and family! Ask them to share it too! When you click on it, it will take you directly to our ACDA supporter page. Any purchases made through this link will go to the ACDA. There isn’t an end date for selling. This link will stay active and will be great for repeat orders.

Happy selling!! Let me know if you have any questions.”

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Note: If you are interested in selling 50+ bags with additional benefits to the ACDA, please contact us at secretary@acdassociation.org for further details!

ACDA Store

Check out the ACDA shop on Spreadshirt! We opened our own online shop to sell directly to you with a designated portion of the sale supporting the ACDA. The ACDA earns a commission equal to 20% of every product sold! Spreadshirt then deposits our earned commission payments directly to the ACDA account on a quarterly basis. T-shirts are just the beginning of the products offered…check out our store to see hoodies, baby clothes, buttons, mugs, drinkware, phone cases, tote bags, doggie bandanas, etc.

Standard shipping rates in the U.S. are $5 shipping for orders up to $49.99, $7 shipping up to $99.99, $10 shipping up to $159.99 and free shipping on $160+. Please see the website for international shipping rates, which is available to many countries worldwide. Be sure to check out the banner at the bottom of our store to see if there are any sale promotions currently running! Please also refer to Spreadshirt’s fair return policy.

Please contact us if you are organizing a fundraiser and would like to coordinate with us to add your child’s name to our designs for sale in the store for a set time period during your fundraising efforts. Please also let us know if there is a special product you would like us to add to our shop.

We look forward to spreading the word about ACDMPV and raising funds for the ACDA through our shop!

Thank You!

Logo:
Our beautiful new logo was designed and created by Ali Christensen. Ali is a friend of Bob and Kristen Rilling, ACDA parents to Fallon (October 10, 2013 – October 21, 2013). Ali and Kristen grew up together playing soccer and basketball and we are so incredibly grateful to Ali for contributing her time and professional talents to our organization.

Newsletter:
We hope everyone enjoyed the new design and layout of our latest newsletter, ACDA Notes. Our heartfelt thanks to Michaela Oltmans, ACDA mom to Harper (May 11, 2012 – May 24, 2012), for providing the ACDA with the beautiful new template.

We are so thankful for the talents and generosity of ACDA parents and their families and friends as we work towards the mission of finding the cause and cure for ACD.

 

Launch

We have a new look! We are pleased to announce the following changes being launched today:

1.  Logo – The ACDA has an official new logo (see it at the top of this page!)
2.  Website – The ACDA website has a brand new look with lots of new features!
3.  Newsletter – The newsletter has been redesigned and streamlined!
4.  Store – A new store with the ACDA logo on your favorite products with a designated portion of the proceeds benefiting the ACDA!

Today marks the official unveiling of all the efforts by the ACDA over the past year to implement design changes and present the most current information available to our registered families and the public. The ACDA began in 1996 and we are so excited to enter our 20th anniversary year in 2016 with our new look. Please read more detailed information about the changes below. We hope you will spend some time exploring and sharing our redesign!

The ACDA website has been *completely* overhauled to reflect our new look and provide the most up to date content. Most importantly, please note the change to our website address, which will be our permanent home going forward. Please update your bookmarks accordingly: http://acdassociation.org

The website has been carefully crafted to be a one stop portal for anything and everything related to ACDMPV. We not only wanted to provide current genetic and research information but also grief resources and community resources. Essentially anything related to ACDMPV has been consolidated into one location with easy to navigate menus. We hope you will visit the new website and share it far and wide with your friends and family.

Below is a brief summary of the website redesign:

  • New design – Fresh new look optimized for both desktop and mobile platforms.
  • Information – All content is now the most up to date information available, including genetics, research, FAQs, etc. We also added numerous new pages, such as a summary of NORD grants, maps, history of the ACDA, links for medical professionals, etc.
  • Donate – The donation page is easier to navigate and includes instructions on how to donate directly to either the ACDA or the NORD Research Fund (ACD).
  • Social Media – Our Twitter and Facebook feeds are now linked directly to our website, along with the ability for visitors to share our content through social media services.
  • Grief resources – Recommended support groups, book lists, song lists and links to personal blogs written directly by ACDMPV parents.
  • Community resources – Links to every newspaper, magazine or blog article written about families affected by ACDMPV.
  • Fundraisers – Summaries of current and completed fundraisers organized by ACDA families. Please contact us at secretary@acdassociation.org if you would like us to add a description of your fundraiser benefiting ACDMPV research.
  • Store – An easy to use store with the ACDA logo on your favorite products with a designated portion of the proceeds going to the ACDA. Ships internationally to many countries!