News Flash!

Dr. Herbst will be going to Sweden to give a talk on Dercum's Disease and work with other investigators and clinicians sometime in May/June. (Dates to be announced later.) Watch our site for more details. What an exciting opportunity for her to share her knowledge with others!

 

 

Please help her continue to learn more through research by donating to our fundraiser for the Dercum's Research Survey Project. Details are below along with the link to donate.

I'm excited to tell you about a new way we can help Dr. Herbst and ourselves!

Dr. Herbst has a project in mind that could begin soon. How many of you have read her article "Adiposis Dolorosa Is More Than Painful Fat"? That article helped us learn what symptoms are common with Dercum's Disease. Great information! But it was based on a survey done more than 5 years ago. Wouldn't it be great to not only get an update but to actually be a survey participant?

Dr. Herbst estimates that it will take $1500 to pay assistants to do mailings, enter and validate the data and do some preliminary analysis.

We can help by donating toward that effort! Cure Dercum's is organizing this and will keep track of all donations and donors. The money raised (minus paypal fees) will go directly to Dr. Herbst's research fund at the University of San Diego and will be earmarked for this project. Any extra money received will be saved for the next project. Periodic updates will be posted on the Cure Dercum's site. Once the money has been raised, an invitation to partcipate in the survey will be posted on our site and on facebook. If you were in the original survey, Dr. Herbst will attempt to contact you directly. If you were in the original survey and your contact information has changed, please contact her directly at kaherbst@gmail.com.

Donations can be made through the link on our site. If you are not able to use paypal but would still like to donate, contact me at damuffett@aol.com and I will give you some options or go to www.lipomadoc.org. (If you donate that way, please let me know so we can keep track of the donors for this project.)

Let's make this happen!

Diane

Fundraiser for Dercum's Survey Research Project

Happy New Year Everyone!

 I'm excited to tell you about a new way we can help Dr. Herbst and ourselves!

 Dr. Herbst has a project in mind that could begin soon. How many of you have read her article "Adiposis Dolorosa Is More Than Painful Fat"? That article helped us learn what symptoms are common with Dercum's Disease. Great information! But it was based on a survey done more than 5 years ago. Wouldn't it be great to not only get an update but to actually be a survey participant?

 Dr. Herbst estimates that it will take $1500 to pay assistants to do mailings, enter and validate the data and do some preliminary analysis.

 We can help by donating toward that effort! Cure Dercum's is organizing this and will keep track of all donations and donors. The money raised (minus paypal fees) will go directly to Dr. Herbst's research fund at the University of San Diego and will be earmarked for this project. Any extra money received will be saved for the next project. Periodic updates will be posted on the Cure Dercum's site. Once the money has been raised, an invitation to partcipate in the survey will be posted on our site and on facebook.  If you were in the original survey, Dr. Herbst will attempt to contact you directly. If you were in the original survey and your contact information has changed, please contact her directly at kaherbst@gmail.com.

Donations can be made through the link on our site. If you are not able to use paypal but would still like to donate, contact me at damuffett@aol.com and I will give you some options.

 Let's make this happen!

 Diane

RI Golf Tournament & Some Interesting Things in the Works

Last Saturday, October 6th, was the 5th Annual Barbara Croker Golf Tournament. There were over 120 in attendance (over 90 of them golfers) and it was the first year the event had a corporate sponsor, McShawn’s Pub of Cranston, Rhode Island, and many individuals and local companies that sponsored a hole and donated items and gift certificates for the raffle. 

 
As always the Rhode Island Dercum's Fundraiser group did an excellent job.  There is a lot of time and energy the committee puts in to get this event up and running every year and many of you will never know the people who do this as a labor of love for their friend and/or family member, Barbara and in turn for all of us suffering from this disease, but we all owe them a bit of gratitude for all they do.  After 3 years of attending the events RIDF puts on, it still amazes me how well they are organized and how much work they are all willing to do to get the job done. 
 

This all being said, there is always a point where I start to get teary eyed and it is usually when all the kudos are going out or when Barbara gets up and talks (and thankfully did not make me get up there with her this time – thanks Barb!). This time, I think I was having a little more emotion throughout the event because I realized just how much all these people who are not directly affected by our disease are so willing to help out and the human connection that is out there if we just open our eyes and hearts.

 
OK, enough sappiness.  Let’s get down to business.  Our biggest advocate, Dr. Karen Herbst, got up and spoke.  She talked about some of the things she touched on a year ago and probably spoke about at the conference but there are a couple of things in the works that are helping her indicate more about this disease. 


She spoke (and there was a great banner with all the information up) about the imaging that took place in Texas on 3 woman with Dercum’s.  The imaging was done with using NIRF (near-infrared dye – to read more about this check out this link: 

http://uthealth.technologypublisher.com/files/sites/p62-64_eva_sevick.pdf)


Using this method, they were able to look at how the lymphatic system was working (or in DD’s case not-working).  The study is yet to be published but when it is we’ll be sure to get the link up.

 
Also, there has been some updated in the genetic testing of two families that have known genetic link of DD.  Dr. Herbst said that there were many genes that the DD connection could be on and she was given a list of them to go through.  She wants to be thorough and make sure she misses nothing so this will be a long process.
 

Best wishes, Dr. H and thanks for all you do. If I got anything wrong, go light on me, I have DD J
.

Our new fundraiser

We've started another fundraiser to close out the year.

It's so important for us to be able to have some research done! All money raised will go to the FDRS for Dercum's Disease research. (Just Dercum's - it's specific.)

I know most of us don't have a lot of money to spare but please give what you can. Every little bit will help get us closer.

Just click on the chipin button to the right and you can use your paypal account to pay.

Thanks so much for your help!

Another way to help! Use iGive and donate when you shop!

Cure Dercum's is now a registered cause at iGive. Many of you are familiar with it already and have helped raise funds for other causes. If you are not yet registered, sign up and we get a bonus! If you are, please consider selecting us as your cause to receive a portion of your shopping dollars. All money received will be used for the education of the medical community about Dercum's and to give money toward research regarding Dercum's. The link is below.

Thanks so much for your support!

http://www.igive.com/welcome/lp1/onemillionbuttons.cfm?c=60875&m=823822&jltest=1

Results of the Scentsy fundraiser

Jean tells me that we raised $44 dollars from the fundraiser. YAY!


This was great opportunity for us to raise money, next time...we will do better! THANK YOU TO ALL WHO PARTICIPATED!!!

Time for Our Second Fundraiser!

It's that time of year when everyone is in a giving mood and what better way to give than to help us move forward with Dercum's Disease research? Last year the JAD team raised just over $1000. I would LOVE to see us get $2000 this year!

We've got a head start from the very generous people who have donated $160. Can we get $1840 more? We can do anything!

I call this fundraiser the "Ask your friends and family" fundraiser. You may see them later this week. Ask if they will make a donation to help further research on your disease. Many will be glad to do so and it will help all of us.

All money raised will go to the FDRS (Fat Disorders Research Society) designated Dercum's research fund.

The link is on this page. You can direct friends and family to the link to use a credit card through paypal. Or you can collect money and I will give you an address later.

If you have any questions, email me at damuffett@aol.com.

Thanks everyone! And have a great holiday!

SCENTSY FUNDRAISER

Our friend, Jean, is at it again.  She is donating part of all her sales to Dercum's research.  Scentsy is a great product with some fabulous scents.  Sit back and relax while your home is filled with beautiful aromas and no need to worry if you doze off in comfort.  Scentsy products are safe because no open flames are used.  The warmers are actually powered by small light bulbs.

15% OF SALES WILL GO TOWARD RESEARCH AND BRINGING AWARENESS TO DERCUM'S DISEASE

THIS FUNDRAISER WILL BE GOING ON THROUGH DECEMBER 12, 2011

Current Fall/WINTER Catalogue is out and I am giving the catalogue to YOU FOR FREE!!!

NEW PRODUCTS INCLUDE:

SCENTSY SOLID PERFUME
AT LEAST 3 NEW SCENTSY BUDDIES, for those children that touch our lives!
NEW FIREFIGHTER & POLICE OFFICER WARMERS (for your favorite public service worker!)
NEW SOUTHWEST DESIGNS

NEW PLUG-INS for those of us that want to get a great gift on a budget!
FABULOUS NEW SCENTS!!!!

SCENTSY PRODUCTS MAKE GREAT CHRISTMAS GIFTS AS WELL!

Thank you for your time and help!
Have a blessed holiday!
sweetscents4life@yahoo.com
https://sweetscents4life.scentsy.us/
 

HELP US FIND A CURE FOR DERCUM'S DISEASE!

15% of ALL sales from now through DECEMBER 12, 2011 will go towards our cause!

Can you smell that sweet scent? Shopping that helps Dercum's!

                            

https://sweetscents4life.scentsy.us/   Click to get involved in a wonderful fundraiser!

10% of the total amount of sales will be dontated by Jean-Marie Warren through her commission to educating people about Dercum's Disease, and Reasearch of Dercum's Disease!

The fundraiser starts August 1st 2011 and goes thru August 30th 2011. That's over 4 weeks of fundraising!

Use this opportunity to start your CHRISTMAS SHOPPING!   

Show your support for Dercum's Disease and get an authentic Scentsy warmer, and Scentsy scents today!
This charity and fundraiser is being offered through http://curedercums.blogspot.com/ and Jean-Marie Warren, Scentsy Independant Consultant. Please get involved in this wonderful opportunity to help us find treatment and a cure for this debilitating disease!

Jean-Marie is also a sufferer of Dercum's Disease. Let's all join her is making her fundraiser a success! Please share this information on your facebook page and with friends and family. Together we can make a difference!

Benefit for Dercum's Disease Research

What a fun idea!

If you're in southern California or will be visiting on July 24th, plan to attend the Cupcakes and Cocktails benefit for Dercum's Disease Research!

Sunday, July 24th. 1 - 4 p.m. at Del Mar Power House in San Diego.

Seats are limited!

$25 for cocktails, cupcakes and a great cause!

Register online at sandiegocupcake.com

Our first fundraiser!

We've just started our first fundraiser! It's called "Just give 5". We know things are tight but $5 is less than the cost of lunch out, right? If 100 of our DD family and friends give $5 by the end of July, we will meet our goal to raise $500.

All proceeds will be donated to Dercum's Research through the FDRS.

Please help!

The link is:


Thank you!

Karen's Birthday Wish

Our favorite doctor's wish for her birthday is for all her friends and family (and family and friends of friends) donate to help find a cure for Rare Adipose Disorders (Dercum's, lipedema, Madelung's and familial multiple lipomatosis):

Her message is below.  To donate, please click the button.  Thanks!

"Hello, and thanks for checking out my Birthday Wish!

For my birthday on June 23rd, I'm asking my friends and family for a special gift: help me raise $5000 for Help FDRS Stop the Hurt. It's a great cause that is working towards increasing research into rare adipose disorders (RADs). Anyone that has an extra ounce of adipose (fat) on their body will benefit from this research. Some of the best discoveries have been made when investigating areas that do not get enough attention and that's where we are with RADs today. Think about the children and the humiliation they endure from other kids becasue they have increased and many times very painful edematous fat because of their RAD. It is not just food that makes you fat!

I chose Help FDRS Stop the Hurt because The FDRS is dedicated to funding more reserch into the area of RADs. Just this year, the FDRS sponsored the largest gathering of people with RADs ever. The very best scientists and physicians flew in from the event flew in from around the world to educate and help raise money for a cure.

Please consider giving to my Birthday Wish, and together we can help stop the epidemic of obesity in the world and at the same time, provide a better quality of life for those with RADs. If you can't give now, I'd really appreciate if you'd share this page with your friends.

Thanks so much,

Karen

I'm asking for $25, or as much as you can afford."

Help FDRS Stop the Hurt

Donate and share.  FDRS is a non-profit organization that raises monies for research and to spread awereness of rare adipose diseases such as Dercum's.