Archive for FDRS
After much careful deliberation, it is with a heavy heart that I write to tell you that I have resigned as President of FDRS, effective at the end of July 2012. The reason for my resignation is that I simply cannot effectively balance both working full time as a consultant and leading FDRS. It is especially challenging, as I am sure many of you experience, because my physical stamina continues to wax and wane at the will of Dercum’s Disease. When I took over the President role in October 2010, I had only started my college admissions consulting business shortly before. As that business continues to grow at a fast clip, I find myself in a constant tug to find enough time and energy to do everything. I feel that FDRS deserves to have a President who has more time to devote to all the great things we envision for this organization.
I will, however, continue to serve on the board of FDRS as Treasurer. I am hopeful that reducing my role on the board will allow me to contribute to FDRS at a level that better fits with my work life. And before I leave the role of President, there are several big projects that I hope to complete for FDRS, to better position us for future growth.
FDRS is pleased to offer an informative brochure on Dercum’s Disease. It offers useful information for patients to bring to their physicians, as well as great advice for you to follow in the treatment of your disorder. It’s also a great way to spread awareness to friends and family about your disorder and its symptoms.
This brochure was made rather quickly for a fundraising event, and so we actually have a great team assembled that is working on an even better version, as well as brochures for the other fat disorders. Until those are ready in a few months, we would like to get this one out to as many of you as possible.
For a free printed copy of this brochure, simply send a self-addressed stamped envelope to:
2305 Robincrest Ln
Glenview, IL 60025-4112 (USA)
If you would like multiple printed copies, you may order them below for a nominal fee to cover printing costs and postage. No additional shipping costs will be added for the brochures (other items purchased with your order may have nominal shipping costs).
For those of you outside the United States, if you would like a digital copy of the brochure emailed to you in PDF form, please email TinaTranfaglia@fatdisorders.org with your request.
While you are at our site, we hope you will also take the time to register. We are diligently trying to build a comprehensive distribution list so that we can communicate with you directly when we have new information, such as this, to share. We promise, we will never share your email address with anyone and your privacy is of the utmost importance to us.
Now you can proudly display your passion for finding a cure for rare adipose disorders (RADs), while you go about your daily tasks, with these reusable bags. Each bag is made of non-woven material in bright green with sharp black trim. The bags measure approximately 17″w (at widest point) x 12″ h x 3″ deep. They are great for taking on a light shopping trip, bringing lunch or papers to work, carrying craft materials, and more!
The writing on the bag says “I CARRY HOPE FOR A CURE” and lists the 4 RADs, along with the FDRS website.
We wanted to let you know about all kinds of fundraising and awareness-generating events that are planned for the coming months, from San Diego to Rhode Island, Iowa to Texas. Some of these benefit FDRS, while others benefit other research funds. We hope you will be able to attend one of them. Many FDRS Board Members will be in attendance at the various events too!
Now you can show your support for FDRS by proudly using this high-quality stainless steel coffee mug for each cup of hot coffee or tea you enjoy throughout the day. It has a secure lid with a slider to reveal the sip hole, a comfortable and sturdy handle, and is heavyweight with a non-skid bottom. The mug holds 16 oz. when filled to the brim, and has a 12 oz. “practical” fill level (with lid on). It also helps keep cold beverages cold.
It is shaped to fit in a car cupholder, and the front is imprinted with the FDRS intials in green.
Have you noticed the beautiful artwork that we have been using as an icon on all of our announcements for the 3rd Annual FDRS Midwest Conference, taking place April 29-30 in Elk Grove Village, IL? Have you wondered who created this beautiful imagery? Have you speculated on what what it might mean?
The artist is Anna Hogbin, of West Virginia. Although Anna has spent her career as a professional counselor, she is also an accomplished artist, having won regional and state-wide awards in West Virginia. Her beautiful art is a personal passion and a form of therapy for her, and most often she concentrates on doing florals.
Anna likes to call this piece “The Lumpy Circles of My Life.” It is an abstract piece that started when she and Read More→
This page contains all the information you need to learn about and register for the 2011 FDRS Midwest Conference, scheduled for April 29-30 at the Sheraton Suites Chicago, in Elk Grove Village, IL (near O’Hare international airport). If you have one of the painful fat disorders, suspect you do, or care for someone who does, then this is a must-attend event for you. This is expected to be the largest gathering of fat disorders patients ever, with world-renowned experts sharing research results and answering your questions about Lipedema, Dercum’s Disease, Madelung’s, Familial Multiple Lipomatosis, and Lipo-Lymphedema. We expect this conference sell out quickly (max # tickets is 160), so don’t wait to register!
Are you feeling better now that you have been managing your fat disorder through dietary changes for a while? All of you out there with Lipedema, Dercum’s Disease, FML, Madelung’s and more, who are trying to stick to the RAD Diet, know that it can often be a challenge to find a healthy but hearty snack. You don’t want to eat salty snacks that are fried or loaded with empty calories, and you’re probably sick of more chicken or veggies! So I thought you might enjoy this easy recipe for Hummus Pancakes with Tahini Dressing, originally published in Parade Magazine in 2008 and modified slightly by me. They are made with heart-healthy fats, and chickpeas are loaded with fiber and great nutrients. These are a savory pancake–great for lunch or a snack–but don’t make ‘em for breakfast! Read More→
A fundraiser to accelerate research for Dercum’s Disease, Lipedema, Madelungs and Familial Multiple Lipomatosis—RADs or Rare Adipose Disorders, as we call them— was held on September 11, 2010 in Canadian, Texas. The event was hosted by Kristi Lowery, Fundraising Chair for FDRS, and it was a huge success! Several FDRS board members traveled long distances to attend and meet face-to-face for the first time, since we all live in different cities around the country. Outgoing President Sue Grimshaw also attended and handed over the gavel to new President Tina Tranfaglia. It was sad to have Sue leave us, but we all enjoyed our time together. Read More→
Hi everyone! I hope you are having some success sticking to the RAD diet and feeling better because of it. There’s nothing better than chili in the Fall, is there? Well, since we can’t eat beef, I have adapted a recipe for White Bean and Chicken Chili to be (mostly) RAD compliant. If you use coconut oil in this one, you will get a Thai flavor profile, because of the combination of hot pepper and coconut. Add a little fresh cilantro on top and it will taste authentic Thai. This is also a great way to use up leftover rotisserie chicken. Here’s the recipe: Read More→