Thursday, December 18, 2014

The ABDA is looking for a volunteer Director of Development (fundraiser)

From the American Behcet's Disease Association:
The ABDA is seeking a VOLUNTEER for the position of Director of Development.

Job Description:
The Director of Development is a VOLUNTEER board member position of the American Behcet's Disease Association (ABDA). The Development Director’s primary responsibility is to ensure enough money is raised to support the mission and growth of the ABDA. This includes developing and driving annual budgets and fundraising campaigns, identifying funding sources, growing and nurturing donor and sponsor partnerships, ensuring a diverse and sustainable base of individual donors and volunteers, overseeing special events and ensuring proper reporting, data entry and other supporting systems are in place and up-to-date.

As stated in the ABDA Bylaws, adopted on March 18, 2008:
The Director of Development is not an Officer of the ABDA Board of Directors.

General broad duties of all Board members:
1. Finance participation as a Board member.
2. Serve a term of office that is three years.
3. Always act in accordance with the Constitution and Bylaws, to abide by the guidelines as stated in the Code of Conduct, and to achieve the Association’s mission through prudent and ethical action.
4. Provide leadership, clarify, and sustain the mission of the Association.
5. Attend and actively participate in decision-making process and Board votes, all monthly Board calls, weekly Board Water Cooler calls, and attend one Board meeting per year.
6. Participate in establishing strategic plans, to approve and support the financial and program goals of the annual budget, and to ensure the Association’s financial stability.
7. Actively seek candidates for the Board who have demonstrated leadership skills, a commitment to fighting Behcet’s Disease and to the Association, and who bring diversity of all types to the table.

Specific responsibilities of the Director of Development volunteer:
A. Develop and execute an annual fundraising plan which supports the ABDA’s annual budget and key strategic programs.
B. Regularly report fundraising milestones, progress, blockers, risks and actions to the Board of Directors.
C. Develop a positive ABDA brand, focusing on a strategy to expand donor audiences through strong partnerships, community relations, newsletters, speaking engagements, and other activities to raise awareness.
D. Secure and grow financial support from individuals, foundations, grants, and corporations.
E. Direct the production of campaign summaries and management reports by setting priorities for support staff in order to implement campaign action plans, gauge results, and determine future courses of action.
F. Define successful Donor Recognition and Volunteer Recognition, and drive timely compliance which increases the satisfaction, motivation and retention of ABDA donors and volunteers.
G. Assist in recruitment, orientation and training of volunteer staff.

Must have computer with Internet connection and color printer, working knowledge of database and Microsoft Office programs, a minimum of 2 years working experience within the fundraising/event planning industry, and the ability to travel to events. Must be a motivating public speaker and networking professional. Must have storage available for products.

The Director of Development serves a 3-year term.

This position can expense business-related items following ABDA’s Expense Reimbursement Policy and Procedure. Expenses are pre-approved by the Board.

Estimated Time Commitment (per week):
Minimum required: 3-5 hours per week, excluding events.

If interested, please submit resume to

Wednesday, October 22, 2014

The best way to order the new Behcet's book and Barnes & Noble have dropped the ball when it comes to the new Behcet's book. Amazon prefers to say it's "out of print" instead of changing to the new release date of November 30th. B&N has cancelled all pre-orders, refunded people's money and removed the book from their site. Aaargh!

At this point, pre-ordering the book from the publisher's own website is the best option for getting a copy when it's finally available. They're offering a 30% discount with the redemption code below. According to the publisher:
Please direct people to this link-- 
If they use the code MLIWEB, they will get 30% off their order. This would ship as soon as it hits our warehouse and is the fastest way for customers to get the book.

A 30% discount is even better than amazon's price. Yay for Mercury Learning and Information.

Thanks for your patience.

Friday, September 19, 2014

Abstracts from presentations at the International Behcet's Conference in Paris

It would have been great to attend the 2014 International Behcet's Conference in Paris (going on right now, from September 18-20!), but the next best thing is reading the abstracts / summaries of the presentations and posters. All of the abstracts have been posted online and are available right now at

You can also follow tweets from ABDA Board members who are attending the conference:
@ABDAbehcetsUSA  and  #Behcets2014

Happy reading!

Sunday, August 31, 2014

Read this post BEFORE you order a scammer's fake ABDA shirts!!

Someone has set up a fake ABDA page on Facebook ( and they're offering fundraising t-shirts for sale. A link sends buyers to

DON'T buy any products from this person! The design on this shirt is being used without the ABDA's permission. None of the money will go to the ABDA for fundraising.

Here are links to the legitimate ABDA fundraiser going on right now, as well as the official ABDA website and Facebook page:

ABDA official hoodie fundraiser (3 days left!):

ABDA's official website:

ABDA's official Facebook page:

It's hard enough for small organizations like the ABDA to raise funds. This type of scam makes it even harder.

Monday, July 7, 2014

Additional information about the upcoming Behcet's book -- Kindle and e-book versions

The publisher contacted me this morning with additional information:

It will be on Kindle about a month before the printed version appears, and about $10.00 less than the printed version. Unfortunately with Kindle, the files must be up before you can post the info (unlike the Amazon print version). It will also appear on our e-Book  delivery platform, and EBSCO. Several other e-vendors will pick it up once the files are on Amazon. iPhone/iPad users can get the Kindle version and use a "reader" for those devices or version will allow it to run on any device without a reader.

Sunday, July 6, 2014

My new book on Behcet's disease is available for pre-order on!

My new book on Behcet's disease is available for pre-order on in the U.S., U.K., Canada and other Amazon-serviced countries, with an expected release date of mid-October. I'm sending the final manuscript to the publisher next week.

If people in the U.S. order the book through Amazon's Smile program, Amazon will donate a portion of the cost to the American Behcet's Disease Association. The link for the Smile program and the book is here:

As a side note, I didn't get an advance from the publisher to write this book and have spent over 1000 hours researching and writing it. The publisher will get most of the money from every sale, but it's still worth it to me because I think it's going to help a LOT of people. I'm very proud of it.

ISBN-10: 1938549406 
ISBN-13: 978-1938549403

Friday, July 4, 2014

Add your location to the worldwide Behcet's map from RareConnect

Do you have Behcet's? RareConnect has put together a worldwide map that shows where individual BD patients live. The map is anonymous, and your personal information isn't given out to anyone who clicks on the map's pins. You can choose the identifying name you'll use, and your pin is added within 24 hours.

Over 200 patients around the world have participated so far. Help all of us to feel more connected by joining this effort! Make your own pin here: 

Sunday, April 13, 2014

A Guest Post...The Magical Grab Bag of Behcet's

Every once in a while, I read something that strikes a chord. This post was written by a woman named Chrissy, who placed it on her Living with Behcet's blog in 2012. It's reprinted here with her permission.

The Magical Grab Bag of Behcet's

At first I didn’t understand how the people with Behcet’s could think about it daily. Why let it control you? They are constantly thinking about their symptoms and how it controls their lives. After almost a year of being sick, I finally get it.

My symptoms have worsened and it’s all I think about. Why? It’s actually pretty simple: I can’t go somewhere without thinking how it’s going to affect me. I don’t know if I will make it though my sister’s baby shower or a family Christmas get-together, or if I can even make it there in the first place. It consumes you. Even if you don’t want it to. You can fight it, but it will only make you worse off in the long run.

You see, at first I was stubborn and thought I can still do everything I used to, but in moderation. It’s not that easy. You never know how you are going to feel on any given day; even if you start out feeling good, you can go downhill quickly. It’s like the weather, sunny one moment and stormy the next.

Then comes the denial. The time when you try to act normal even if you don’t feel good, hoping to outsmart it. What a crushing blow this was. Even putting on a happy face doesn’t matter, because it’s always there. Every corner I turn, it’s rearing its ugly head waiting for me. Waiting to either pounce a new symptom on me or worsen an existing symptom. I try to ignore the fact I can’t make plans because I never know how I’m going to feel, but reality sets in after a while and you just feel hopeless.

What I wouldn’t give to feel normal again, to be able to do things, to look towards the future. See, it’s just not that simple with Behcet’s. But that’s because it’s a complex, unknown disease. And that’s how you have to treat your life - every day is unknown. Your life becomes a complex problem that you try to solve, but no matter how hard you try, you will fail. This is because you don’t know if the medications you’re taking are going to keep working, or if you’re going to need to add a new one, or if they will even work in the first place. With Behcet’s, you have to take it one day at a time. Sure, you can dream about the future. It doesn’t stop me one day hoping for a cure. Or having a remission of symptoms. I’d take either one.

I’ve read the spoon theory before and think it’s a great theory and a good start, but it doesn’t quite describe what living with Behcet’s is like. It was also meant to describe lupus. It got me thinking, how do you describe it to someone? Is it even possible? This is how my theory evolved.

Living with Behcet’s is like reaching into a grab bag every day and pulling out a handful of symptoms. But it’s not just a regular grab bag; it’s a magical grab bag. It’s a magical grab bag because some days you may only have a couple symptoms, and other days you have too many to count. Then the day comes when you pull out the magical piece of paper that has a new symptom on it.

The funny thing about this disease, and I’m being sarcastic, is even when you think you have a hold of the disease, your symptoms can change. They can change at any given day or time. Even if you pull out a magical piece of paper saying you will have three symptoms on a day, like fatigue, joint pain, and mouth ulcers, you could start to develop others as the day goes on. You may have pulled out a piece of paper from that grab bag that says “I’ve decided to give you pain like a semi-truck has hit you at noon” or “I’ve decided to give you a headache around 2 PM and a genital ulcer at 5 PM.” You never know when another symptom is going to pop up. This is why I call it the magical grab bag. The other thing about this grab bag: it isn’t coated with a magical fairy dust that makes your symptoms go away.

The worst part about this disease is you may start feeling good and having a day of minimal symptoms, which is very rare but not unheard of. I’ve learned to never take this for granted and go overboard with doing normal things - because at any given moment that feeling good will end and I’ll be knocked right back on my butt, but usually fifty times worse than I was feeling before. I like to call this the tornado effect. It’s the calm before the storm. It wreaks havoc on your body once it hits. Usually when it’s this bad, there’s not a damn thing you can do about it. No amount of pain medication or changing positions will help. This is the point where most of us cry. Sometimes the cries are from frustration from the medications not working, other times it’s from the pain itself, and other times it’s from knowing there’s nothing you can do but wait it out.

Even though you are reading this, you will never fully understand what living with Behcet’s is like. Something as simple as cleaning the toilet is a blessing most days. If I can do that, I feel a sense of accomplishment. Then there are the days if I can make it to the bathroom without crawling, that’s a blessing. Every day is just one magical bag of symptoms: you never know what you’re going to get for the day.