We are pleased to tell you about an exciting new “virtual” fundraiser that will be going on for the next two weeks. Allison Steinbach, a member of our community and an Independent Consultant with Thirty-One Gifts, has generously offered to donate 20% of sales for all products purchased between November 1 and 19. Just in time for the holidays, this is a great opportunity to do some shopping for unique, monogrammed handbags, totes, lunch bags, and more for your family and friends (or maybe for yourself!). There is also a November special going on, so if you spend $35, you can get a Medium Utility Tote for just $5 (a $30 value).
To browse the catalog and order:
Visit www.mythirtyone.com/JoyBags. Click on My Parties tab on the toolbar, and then the FDRS Fundraiser will appear. Then simply hit Shop Now. If you have any questions, contact Allison at 713.478.5244.
A Little Bit About Allison…
Allison just recently moved to Nashville, TN and is a newlywed. She is very passionate about helping research for both Lipedema and Dercum’s Disease because her mother Leisa (in Houston) was diagnosed with both in rapid succession. Allison sees firsthand the pain with which Leisa struggles everyday, without any relief or surefire remedies available. She is hopeful that FDRS can help find a cure for these adipose tissue disorders or treatments to help alleviate the pain. And that is why she is so generously donating the proceeds from sales for a full two weeks. Allison became involved with Thirty-One Gifts in July 2012, after receiving the Large Utility Tote, monogrammed with her new last name, as a wedding gift. She loved using it and started searching around the website to order more of their awesome products. She then decided to become a consultant and has loved representing this product line and the flexibility of setting her own schedule. We are very grateful to have Allison in our community and would like to thank her for all she is doing.
Below is information about an FDA initiative. Thirty-nine diseases are in consideration for priority and 20 will be selected. This has a Nov. 1 deadline!
As part of its commitment under the recently approved Prescription Drug User Fee Act (PDUFA V), the FDA will be conducting an initiative, called the patient-focused drug development initiative, to provide for a more systematic approach to obtain the patient’s perspective on the disease severity and the currently available treatments. The intent is to ensure a thorough understanding of the severity of the treated condition and the adequacy of the existing treatment options.
Dercum’s disease is NOT on this list!!
The FDA is also interested in public comment on disease areas that are not represented on this preliminary list. The Agency used several criteria to develop the preliminary list of potential disease areas. FDA requests that when proposing additional disease areas for consideration, please describe how you applied the identified criteria in making recommendations for additional disease areas to consider.
These criteria include the following:
Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
Disease areas that reflect a range of severity;
Disease areas for which aspects of the disease are not formally captured in clinical trials;
Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly);
Disease areas that represent a broad range in terms of size of the affected population; or
Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives.
FDA will consider the public comments received at the public meeting and through the docket and post the set of disease areas for FY 2013-2015 on the FDA Web site. By the end of FY 2015, FDA will initiate a public process for determining the list of disease areas for FY 2016-2017.
This is an excellent opportunity to help the FDA better understand how fat disorders affect patients. Your support is essential to ensure that your fat disorder is considered in the future as a selected disease.
Please send your comments in by November 1 to ensure that the FDA understands why your fat disorder should be selected. As you write your own letter, make points that reflect how your fat disorder meets the criteria above.
Comments should be submitted electronically at:
Select ‘Individual Consumer’ for the ‘Category’ and ‘None’ for ‘Organization’ if no other choice is appropria te . Written comments can be submitted to the Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852.
Further information on the patient focused drug development initiative and the list of 39 diseases initially nominated can be found here: https://www.federalregister.gov/articles/2012/09/24/2012-23454/prescription-drug-user-fee-act-patient-focused-drug-development-public-meeting-and-request-for
Sample Letter – limited to 2000 characters
To: FDA Patient Focused Drug Development Initiative
From: <include your name here>
I am writing to request that Dercum’s disease (also called adiposis dolorosa) be included as one of the diseases in the patient focused drug development initiative.
Dercum’s disease is a complex, chronic pain disorder that was initially identified in 1888 as a lipomatous disorder of unknown etiology. Dercum’s disease can affect people of all ages with an average age of onset of 35 years. People have similar signs and symptoms of fibromyalgia but have exquisitely tender fat nodules that cause them to take pain medications including opiates and intravenous lidocaine. It affects over 300,000 children, men and women in the US of all races and income levels. Over 60% of people with Dercum’s disease become disabled losing their jobs, spouses and friends. Dercum’s disease is inherited in an autosomal dominant disorder according to a paper in the New England Journal of Medicine.
What is tragic is that over 100 years, there have been no clinical trials for drugs to treat Dercum’s disease and there are still NO approved treatments and NO biomarkers or outcome measures and NO identified gene.
<Include personal story here>
By ensuring a thorough understanding of the severity of Dercum’s disease from a patient perspective, especially given the lack of any viable treatments to change the course of the disease, the patient focused drug development initiative could make a tremendous difference in the lives of a huge number of people.
I want to take a minute to update you all on our website. You have probably noticed the past couple of weeks that the site has changed themes and has been down sporadically. The reason for this is because we just switched web designers. We have big plans for the site, so please be patient while we go through the transition.
We at FDRS want to thank Mindy and her husband. They took their own time and resources to help promote this years Macy’s shop for a cause fundraiser.
We are pleased to announce that Damien Moore has been selected as the interim President of FDRS, effective August 1. During the month of July, Damien and I will work to transition responsibilities and the entire board will work to acclimate him to FDRS as quickly as possible. His term will run through next April (the original end of my term), at which time he can seek re-election.
Damien has been active in the Dercum’s Disease community for the past year and a half, as a moderator of the Dercum’s group on MD Junction. He is a decorated Navy diver who is transitioning back to civilian life after six years of service to our country. He brings energy and fresh ideas to FDRS and we are all pleased to welcome him aboard.
President, October 2010 to July 2012
We have gathered some updates from the worldwide RAD community to share with you.
Dissolution of the American Pain Foundation
On May 3, 2012, the Board of Directors of the American Pain Foundation (APF) formally voted to dissolve the American Pain Foundation citing “irreparable economic circumstances”. In an e-mail and on their website (http://www.painfoundation.org), the APF states that it enacted key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine, documenting the shocking numbers of US citizens who live with pain. As part of the report, there was a call for immediate changes to address gaps in care.
FDRS remains committed to recognizing pain as one of the major symptoms of several rare adipose disorders, and will support the treatment of pain and the search for new pain treatments with fewer side effects and greater efficacy for our population.
Last Call for FDRS President Candidates
Several great candidates have thrown their hat in the ring to become the next President of FDRS, when Tina Tranfaglia steps down in July. We are grateful to see such enthusiastic and qualified candidates stepping forward. If you have been thinking of nominating yourself for the President role, then now is the time to act. We will accept nominations until the end of May. To learn more about the role, please visit the job description we posted about a week ago. You can view Tina’s resignation letter and other recent board changes here.
Swedish Researchers Rally for Dercum’s Disease
On May 11, 2012, seven patients with Dercum’s Disease joined Dr. Ola Winqvist and colleagues at the Karolinska Institute in Stockholm. Dr. Winqvist spoke in depth about the immune system and its involvement in Dercum’s Disease. Importantly, he described a specialized column that clears inflammatory cells from the blood – a possible treatment for Dercum’s disease in the future.
Dr. Olle Haglund gave an overview of Dercum’s Disease and provided advice on diet, supplements and life style. He also addressed the Cyclic Variations in Adaptive Conditioning™ (CVAC™) process as a means for reducing pain, how to use lymph therapy to improve lymph flow, and cardiovascular stiffness.
Dr. Winqvist completed an analysis of some aspects of the immune system in the blood of people with Dercum’s disease who have Type II, or widespread affected tissue with small nodules in the fat, by fluorescence assisted cell sorting (FACS). He also wanted to examine the immune system in people with Type III, who have larger painful lipomas, often in the absence of obesity.
The patients with primarily Type III Dercum’s Disease who attended the meeting provided blood to Dr. Winqvist for further analyses. All of the people with Dercum’s disease shared their stories and found they had a lot in common. Many people noted their lipomas started after an infection or trauma.
FDRS helped to recruit people for this meeting and will continue to support research in all RADs across the globe. We want to give special thanks to Staffan Erickson who worked tirelessly to encourage people to attend this meeting and Staffan’s girlfriend, Amielyn Garcia-Manzano, for taking pictures at the event. We are grateful for Drs. Winqvist and Haglund and their continued interest in Dercum’s Disease and kudos to all the people who took the time to attend the meeting.
Since this is an election year in the U.S., it is good timing for us to seek a new President to lead FDRS into the future as well. Below you will find a position description for the role of President. If you think you would like to apply for this position, please contact Tina Tranfaglia for more information, at TinaTranfaglia@fatdisorders.org.
THE ROLE OF THE PRESIDENT
The President directs the organization toward achieving its mission: to raise funds to promote research, increase public awareness, and provide information and resources for individuals with rare adipose disorders (RADs) and/or their caregivers. This is a highly visible position, and both an honor and a responsibility that requires stewardship of the organization’s mission, reputation and resources. It involves a variety of larger scale projects and day-to-day activities.
The President of the FDRS will direct and coordinate with board and non-board members to:
- Raise funds to support research into treatements and cures for RADs.
- Reach out to the community with information about research, diagnosis and treatment options, and other topics related to RADs, including building/maintaining databases of patients, donors, doctors, researchers, and other affiliates to whom we communicate.
- Create working alliances with other RADs non-profit organizations.
- Advocate for funding and recognition for RADs, including applying for grants, when applicable.
- Host or sponsor scientific meetings and patient conferences
- Award grant monies for research into RADs
The ideal candidate for this volunteer position should believe in the mission of FDRS, be able to help develop and oversee FDRS strategic goals, and be self-directed and organized. Public speaking and interaction with outside businesses are required, as are strong communication and computer skills. A minimum of a Bachelor’s Degree and experience running a business or a non-profit organization is highly desired. The President must have the time and patience to work easily with a variety of personalities, including people with RADs, and will work with the FDRS secretary to keep a large group of geographically-dispersed individuals on-task.
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.
Dr. Winqvist will be providing an informational meeting on Dercum’s disease at the Karolinska Institute in Stockholm, Sweden on May 11th from 12:30. If you are interested in participating in a study on the immune system and you have Dercum’s Disease Type 3, you can also donate some blood at that time and do not need to make a separate appointment.
More about Dr. Winqvist: Click here
Anyone with any type of Dercum’s disease is welcome at this informational meeting to learn more about Dercum’s disease. This is a great opportunity to increase education and awareness about Dercum’s disease and your quote may make it into the newspaper!
Please contact Staffan Eriksson for more information: email@example.com
Staffan is willing to pick people up at the central station in Stockholm, or you can taxi to the Institute. Staffan will meet you outside the Institute and walk you to the lab.