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.”


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!

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.

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.



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!


The ACDA brochure has been updated and has a wonderful new look.  View, save, email or print your own copies of the ACDA brochure; click for ENGLISH, DUTCH or ITALIAN.

*The ACDA extends its appreciation to Mathijs Lourens and Roelina Jut for the Dutch translation and Federica di Paolo for the Italian translation. Please let us know if you are available to translate to other languages for addition to our website.

Brochure Cover (English)       Brochure Cover (Dutch)       Brochure Cover (Italian)