The SARCOID NETWORKING ASSOCIATION was founded in 1992 to educate individuals, provide information and heighten public awareness about Sarcoidosis.
2014 SNA Conference in Portland, Oregon, October 10th and 11th
The SNA Summer 2014 Newsletter is now available online as a PDF file. Get it for free here.
New: Sign up for the SNA Newsletter delivered to your email
We have made a major decision to stop bulk mail for our newsletters and conference flyers. While this is a big transition for some, we have seen that most organizations do not mail flyers, but send them out through email. So, this Spring 2014, newsletter is the last one being sent out enmasse. We spend thousands yearly to print and mail the newsletters and we want to be good stewards of your giving.
We will be utilizing an email distributor, completely secure. Use the Newsletter Signup link (left) to enter your email information. We will put you on a group mailing list and you will receive the newsletter and other information from us much faster than by regular mail. The newsletter is in PDF format so it will print nicely and you can also forward it to others to share our information. You can also adjust the size of the newsletter to make it easier to read. Even if we have your email, please enter your email in this link so you will be on the same email list as everyone else.
We will also continue posting the newsletter on our website, so you can access it here. We will continue with the quarterly newsletter for now, one each season, but will send out information in between via our website and email. We appreciate your understanding and patience as we make this transition. We would greatly appreciate your feedback. Again, please let us know if you have no computer and need the newsletter via regular mail; and send us your emails so you won’t miss the letters. We appreciate you all so much.
Review: 20TH ANNUAL CONFERENCE ON SARCOIDOSIS –
Take Hold of Your Life
2013 SNA Conference Was a Wonderful Time of Learning and Sharing
On October 11-12, 2013, we held our 20th annual conference at Oregon Health Science University (OHSU) in Portland, Oregon. Last year, 2012, was the first time we had not had a conference but we decided to wait until our transition to our new office was complete. The success of this year’s conference tells us we did the right thing.
On Friday evening, we had a ‘meet and greet’ in the conference room with light finger foods and lots of conversation. This time of mingling segued well into the three patient panel. Marv Michael, Barbarita Gately, and Debbie Dukatz each shared their stories of living with Sarcoid. This opened up the audience to ask questions and also share their own stories. It was a wonderful time of bonding and those that attended Friday evening found new friendships formed and were happy to continue that on Saturday.
Saturday was opened by Dr. Tammy Martin and Dr. Pheobe Lin. Both shared about current research into ocular Sarcoidosis and about the nature of inflammation.
Dr. Ganesh Raghu shared next, giving an overview of Sarcoidosis, which answered so many questions and gave new information. He left a lot of time at the end for questions and for others to share also. He had to get back to Seattle right after his presentation but he graciously took time to talk to people before he left.
Lunch was on our own and many went to the cafeteria at the hospital, pulling tables together and getting to know each other better.
Our afternoon started with Jack and Dani Walker. Jack has been in remission for four years and he and Dani have written a book, telling of their journey and the things they have learned on the way. They were inspiring and have given another avenue for information. Their website is www.daniwalker.com. I encourage you to look and also check into their book.
Our final speaker was Nadine Grzeswokiak, RN. She spoke about the advantages of a gluten free lifestyle and confirmed many of our own suspicions about healthy eating. Her website is www.GlutenFreeRN.com
A DVD of the conference is now available for just $20.00. Please contact us to order yours. It was an amazing conference and well worth watching again.
SNA has a new Executive Director
For over 20 years, the Sarcoid Networking Association has continued to provide support and information to sufferers of Sarcoidosis and worked with other organizations to promote awareness and research for this disease. In that time, we have gone through many changes while still providing these services. As you may know, Dolores O’Leary, the founder of SNA, retired in 2006 and Lynn Short, previous President of the Board, took over as Executive Director. At that time, Kristi Anderson became President of the Board. Now, effective September 2012, Lynn has stepped down for a much deserved retirement and Kristi is now the new Executive Director. Lynn will continue for some time as an advisor.
Kristi has been on the Board since 1997, and carries the passion for this organization that comes from someone who has the disease and has talked to hundreds of people and heard their stories. She has also represented SNA in Washington D.C. and at the National Institutes of Health as well as facilitating two support groups in Oregon and as Director and founder of the Sarcoid Registry.
With the change in directorship comes another change. The office is now moved to Molalla, Oregon. The old address will continue to forward mail to the new address but we are contacting as many members and partners as possible to announce the new address.
We will also be changing our phone number. The new phone number is: 541-905-2092. (The old phone number will be discontinued on April 30, 2013. )
SNA appreciates your patience with the changes that are coming. We will continue to keep this website updated and contact members through phone calls, mailings, and newsletters along with the website information. We look forward to many more years of service. Thank you for your continued support.
The new address:
Sarcoid Networking Association
The new phone number is: 541-905-2092
Note from Sarcoidosis Registry: “We are pleased to announce that the
Sarcoidosis Registry is now online. We are already receiving exciting responses to the site and we look forward to more.
We are proud to have Dr. Om Sharma, Dr. Ganesh Raghu, and Dr. Gopal Allada on
our Scientific Advisory Board. Their involvement adds knowledge and
understanding to this project.
Please contact Kristi Anderson for questions concerning the registry at
[email protected] or 541-905-2092. We look forward to your questions and
responses to this endeavor. If we work together, we can make a difference.”
- Order videos from past conferences … CLICK HERE
- Sale items now available … CLICK HERE
NEWS: Public Service Announcement & Research Studies: There are 18 trials currently recruiting Sarcoidosis patients …learn more
Check out the latest events going on across the country … details here
Sarcoid Networking Association does not promote, endorse or encourage
participation in any specific organization. Details are provided for information
only and is subject to change without notice. Every effort is made
to ensure that the details are as current as possible.