2016 Autoinflammatory Alliance Year in Review

One of the Autoinflammatory Alliance slogans

2016 Highlights for the Autoinflammatory Alliance

A special thanks to all our supporters and volunteers that have helped make this year a great one for advocacy, support, and awareness for autoinflammatory diseases.  Here is a short list of some of impact this year.  A donation now will help us be able to do more for 2017 and beyond!  We help thousands of patients every year individually, in our patient groups, and with special projects. We also help hundreds of doctors and medical professionals that use our resources or request materials for their patients, and have collaborated on some groundbreaking research projects.

SUPPORTING THE AUTOINFLAMMATORY ALLIANCE MEANS THAT MORE FUNDS WILL BE AVAILABLE TO:

  • Fund more research-the more we raise, the more we can accelerate new discoveries and help for patients
  • Increase awareness in the United States and internationally about autoinflammatory diseases
  • Produce more educational materials in print and digitally for patients and medical professionals
  • Translate educational materials into more languages
  • Keep the Autoinflammatory Database updated
  • Maintain and update our saidsupport.org blog and the Autoinflammatory.org website

February: Phase II of the Autoinflammatory Disease Damage Index (ADDI) evaluation process was started. In 2015, we started working on the development of the Autoinflammatory Disease Damage Index (ADDI) tool with a collaboration with a global team of researchers, and a survey of a sample of patient volunteers from our Autoinflammatory Alliance patient community.

The initial tool was presented in a poster and abstract at the Autoinflammation 2015 Congress.  In late September, 2015 all the researchers and Karen Durrant, president of the Autoinflammatory Alliance, met for two days to review the preliminary ADDI tool, that was developed based on the patient input in Phase I with the surveys.

In February 2016, we again reached out to our patient community in a larger sample to evaluate the tool, using the 1000minds program, and feedback from the patients led to the final ADDI tool that was presented at the Pediatric Rheumatology European Society (PReS) Congress in September, 2016, and was published in November 2016 in the Annals of Rheumatic Diseases.

Quinn Paduani obtained the Rare Disease Day Proclamation for South Carolina in honor of autoinflammatory diseases.

February 28: Rare Disease Day 2016 involved a month of advocacy and outreach at a local, state, and national levels by the Autoinflammatory Alliance and their supporters. So many members of our patient community got involved this year at their schools to state rare disease day events and many fundraisers! We are so thankful for their dedication and efforts!

Heather Briganti, one of our board members and advocates did a segment on the news in Albuquerque, NM about Rare Disease Day that you can watch here. Dorelia Rivera, our vice-president represented our organization and our patients at the national Rare Disease Day events in Washington DC.

Julie Cunningham, board member and advocate worked with the Global Genes Project for Rare Disease Month awareness, and launched this nice creative project for children to download and use in their classrooms for Rare Disease Day.


March 12: Our first Par2 Prodigy Disc Golf Tournament was held in Golden Gate Park, San Francisco, CA and we had the support of many sponsors, including Prodigy Discs, Infinite Discs, Sports Basement, Crossroads Health & Hospice Care, PrAna, and many others.  Everyone that came had a great time, got a great disc golf set, stickers and knit hats from Prodigy, and nice golf towels and gift certificates from Infinite Discs. We raised a lot of money and awareness for autoinflammatory diseases! Thanks to all that came, even in the rain to support the cause!

March 24: Colleen Paduani, board member and advocate, and her family appeared on “The Balancing Act” national morning television show to raise awareness for NOMID, a rare autoinflammatory disease, treatment with anakinra and the Autoinflammatory Alliance. Watch it here.

Celebrating 10 years of advocacy and awareness for autoinflammatory diseases!

May 1: Our official 10 year anniversary of our organization!  When we started our organization in January 2006, and were officially recognized by the State of California on May 1, 2006 (formerly as the NOMID Alliance), we were the first organization dedicated to autoinflammatory diseases in the United States, and one of only a few in the world (that also started around the same time as us) for these rare diseases. In 2014, we changed our name officially to the Autoinflammatory Alliance.  We decided to celebrate our 10 year anniversary during our second annual Autoinflammatory Awareness Month in August!

Rare Bears were granted to patients, based on their individual interests. Each one is unique!

July: Leading up to our awareness month, we partnered with Rare Science’s RARE Bear Project to have children autoinflammatory diseases get a one of a kind handmade bear mailed to them, that was picked out based on their interests on our sign up form. We had hundreds of children receive their RARE Bears in August for our Autoinflammatory Awareness month, and we donated funds to cover the shipping costs for hundreds of these bears to be delivered to our patients globally.  Many of these children submitted thank yous and photos, that are a part of the RARE Bear Kids photo gallery. If you are interested in a RARE Bear for a child with a rare disease, please submit this form to Rare Science directly.

Some of the attendees at the SF Autoinflammatory Awareness Month picnic

Attendees at the Texas Autoinflammatory Awareness Month gathering

Oceanside, CA Beach Party Our medical advisors, Dr Hoffman and Dr Broderick (lower left) were there too!

August was our Second Autoinflammatory Awareness Month!  We had many of our patients supporting various awareness and fundraising efforts throughout the month, and some of our board members and advocates attended the in-district lobby days to address the needs of autoinflammatory patients directly with their Senators and Representatives when they were back in their hometown in August.

In addition, we had Autoinflammatory Awareness Month patient gatherings and picnics across the US, and even in the Netherlands!  It was nice to have everyone come together, and many patients had not ever met someone with these diseases in person, until they came to one of these events.

2016 Autoinflammatory Symposium

1st Autoinflammation and Immune-Dysregulation Symposium

September 19th was the 1st Symposium of Autoinflammation and Immune-dysregulation at Walter Reed National Military Medical Center (WRNMMC) that launched the collaboration between the National Institutes of Health (NIH) and WRNMMC for a joint clinic for autoinflammatory diseases and research.  We helped to organize, promote, manage tickets and admission to the conference, presented as speakers, and supported the food and additional costs for this conference that were not covered by WRNMMC.  Leading experts on autoinflammatory diseases and research from the NIH and WRNMMC spoke, along with Karen Durrant, RN and Erin Wilson from the Autoinflammatory Alliance. Learn more about this conference here.

Your donations have helped this conference to happen! We want to raise more research funds in 2017 to support more collaborative research to help more patients, and train more doctors on these diseases. This is just the beginning of this joint collaboration with the NIH and WRNMMC, and we are so thankful to be a part of it!

September 27-October 1st: Karen Durrant RN, president of the Autoinflammatory Alliance, and Saskya Appelman, Autoinflammatory Alliance Dutch patient representative, and member of KAISZ represented patients at the Pediatric Rheumatology European Society (PReS) meeting and concurrent meeting of the European Network for Children with Arthritis (ENCA) in Genoa, Italy.

September 30: Karen Durrant, RN, BSN presented a poster and abstract in the poster walk on a collaborative research project that highlighted the impact and challenges of living with an autoinflammatory disease, specifically for patients with Familial Mediterranean Fever (FMF), Mevalonate Kinase Deficiencies (MKD/HIDS), and TNF Receptor-associated Periodic Fever Syndrome (TRAPS).  Here is our blog post with details of this poster and research project.

November 29th: For Giving Tuesday, we got involved with the #Unselfie movement, and also had a very successful fundraiser! Thanks to all that donated, and shared their Unselfies to raise awareness for autoinflammatory diseases, and support the Autoinflammatory Alliance! Take a look at our community Unselfie gallery!  Learn more here.

autoinflammatory-giving-tuesday-2

December 7th: 21st Century Cures Act becomes a law! Some of our board members have been leading advocates for this much needed law, and the Autoinflammatory Alliance, along with many other rare disease organizations. This law will help rare diseases greatly, and was an effort by many in the rare disease community, and Dorelia Rivera, Vice President had an active role in advocating for this as well.

In December, Colleen Paduani, board member and advocate led a fun “Caroling for Cures” fundraiser in South Carolina.  Some other families have been a part of this fundraising effort in the past, and it is a fun way to raise awareness too! Here is a blog post about Caroling for Cures.

Caroling for Cures in South Carolina!

We really appreciate all your support, and your donation makes a difference to many, all year round!  We help almost 4,000 patients in our private, moderated patient support groups online, and many others through direct contact with us via email, phone or from their doctors. Hundreds of doctors rely on our resources to help them educate their patients on these diseases, and also train fellows or learn more on their own about these rare and complex conditions.  Our blog reaches nearly 50,000 visitors a month, in addition to our website and autoinflammatory-search.org. We also mail out printed educational materials to patients and medical professionals, and do not charge for any of our resources. We work hard to raise the funds to make all materials, support, and information open access for all.

But we really need your support, and that of many more to help us to reach our goals. Learn more here, and make a donation today!

SUPPORTING THE AUTOINFLAMMATORY ALLIANCE MEANS THAT MORE FUNDS WILL BE AVAILABLE TO:

  • Fund more research-the more we raise, the more we can accelerate new discoveries and help for patients
  • Increase awareness in the United States and globally about autoinflammatory diseases
  • Produce more educational materials in print and digitally for patients and medical professionals
  • Translate educational materials into more languages
  • Keep the Autoinflammatory Database updated
  • Maintain and update our saidsupport.org blog and the Autoinflammatory.org website

Thank you!

 

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

More for You

About Karen Durrant RN

I am a Registered Nurse, President and Founder of the Autoinflammatory Alliance (formerly NOMID Alliance) and parent of three boys–one of whom has an autoinflammatory disease.

It is my passion to help increase awareness about autoinflammatory diseases, and empower patients and medical professionals with information, materials and support to help them navigate the complex and challenging path towards diagnosis, and treatment of these rare diseases.

In 2006, I founded The NOMID Alliance (now known as Autoinflammatory Alliance) to help increase awareness and improved care and treatments for patients with CAPS and other autoinflammatory diseases. It was the first, and only organization for all autoinflammatory diseases in the United States at the time. Our mission has always been to help patients of all ages with any of these diseases, and we have continued and refined our efforts with our recent name change to the Autoinflammatory Alliance.

To help educate and increase more awareness, I co-authored the CAPS medical guidebook that was first published in English in 2008, and small comparative disease chart, and the 2012 version in English and Spanish. I am one of the main authors of the first Comparative Chart of Systemic Autoinflammatory Diseases that was was released with the poster presentation with a published abstract at the Autoinflammation 2013 ISSAID Congress in Lausanne, Switzerland. In addition, I have developed and edited our website since 2006, this blog (along with Jennifer Tousseau), and wallet-sized disease information cards for patients on various autoinflammatory diseases.

I have worked in pediatrics for most of my nursing career, from emergency/trauma to research and instructing student nurses in various pediatric units in hospitals throughout the San Francisco Bay Area.

Comments are closed.