It has been a while since we have had any updates, and that is mostly my fault.  I have been very busy working and growing my company for the past few months, and have not had as much time as usual to post any FDRS updates.  But fear not, we are still here, still working behind the scenes to raise money, get the research community involved with fat disorders, and grow FDRS to serve our expanding patient base.  I hope to rev up our activity level again soon…as soon as I get my high school student clients into college!

I wanted to let you know about a few things:

1. If you will be doing some holiday shopping this weekend, here’s a 25% off coupon good at Macy’s.  Just click here to download this coupon, which was provided to us because of our participation in the Shop for a Cause fundraiser last August.  The Friends and Family coupon is good through Monday, December 5.  The discount is even good on sale items!

2. Are you feeling generous this time of year?  Can you spare a few dollars to help cure Dercum’s Disease?  There is a ChipIn campaign going on now to support research into Dercum’s Disease.  The fine folks at Cure Dercum’s, have worked tirelessly to raise money from the community this year.  They are asking for just a small donation, but more importantly that you also encourage your friends and family to support the cause as well.  If everyone donated just $5 and asked 5 friends/family to donate $5 also, we would have thousands more dollars for research in no time…and painlessly!  There is truly power in numbers!  All the money will go to a research fund at FDRS that has been designated for Dercum’s Disease Research.  To donate, visit their donation page here.

Do you need any Scenty Warmers or refills?  Jean-Marie Warren is also offering a fundraiser through Cure Dercum’s.  15% of all orders placed by December 12, will be donated to enhance awareness and research into Dercum’s Disease.  Visit the info page here.

3. And finally….a few miscellaneous announcements.

* We will be offering our 2011 Conference Video for sale soon…I promise. It is a lot of video footage (over 12 hours of video have been edited down, but it still takes up 5 DVDs!)

* We also have an informative new Dercum’s Disease brochure which will be posted on our website soon, for free by download or for a small charge for printed copies.

* We have been able to order a few additional Nu Face Microcurrent Machines at the same discounted price that we had in the spring ($240 including shipping).  They are being shipped to me now.  So if you have had one of these on your wish list, now is the time to buy one at a great price.

* Very shortly, we will be able to offer a credit card charge option for purchases and donations, in addition to our current PayPal option.

As always, thank you for your ongoing support of FDRS.  If you are looking for a good cause for a year-end donation, consider making a tax-deductible donation to FDRS, where 100% of the donation will be put into our research fund.  Wishing you all a wonderful holiday season!

Tina Tranfaglia

President, FDRS

These bracelets are available in a very small quantity.  They were generously donated by Sandi Dimmitt and were hand-crafted by a friend of hers who is anxious to find a way to help Sandi get better.

Shipping is included in the price.

The 3rd Annual Canadian, TX Fundraiser is almost here!

Will you be making the trek to Texas?  Dr. Karen Herbst will be joining the festivities this year.  This great annual event, organized by Kristi Lowery and her many dedicated volunteers, will take place on:

Saturday, September 1oth from 10:00 am to 2:00 pm

Canadian, TX

Schedule of Events:

9:00 am     Registration at Bridge

10:00 am   5K Run/Walk  $25

1 Mile Fun Run/Walk $10

Lunch provided for participants

11:30 am    Luncheon at the Santa Fe Room at Railhead

$25 for adults, $5 for children

For more information, contact Kristi Lowery (806.255.0581) or Mistie Walser (805.255.0157)

Reduced-price CVAC Sessions available Mon 9/5 through Sat 9/10 by appointment only at Canadian CVAC Center, 124 Hobart, Canadian, TX.  Call 806.323.8205 or visit www.canadiancvaccenter.com.

Macy’s Shop for a Cause Results

Thanks to everyone who helped out by buying a coupon booklet for this national event, which took place last weekend 8.27.11.  We raised $500 for our research fund.  We are checking with Macy’s to see if they might be rescheduling the event for you East Coasters who were affected by Hurricane Irene and the resulting store closings and subway closings.  If we hear anything, we will let you know, so hang onto your unused coupons.

Amy Pugliano is the winner for the most coupon booklets sold by a volunteer. Amy will be receiving a special gift basket funded by an anonymous donor. Congratulations, Amy, and thank you for supporting our fund raiser by selling all of those Macy’s coupons!  And many thanks to Dawn Herbst for organizing the event for us this year.

Sandi Dimmitt has successful fundraiser in Iowa 8.27.11

Sandi and her husband Keith hosted a wonderful craft fair on their farm in Fairfield, IA last weekend.  We don’t have the final fundraising numbers yet, but many people enjoyed games, a dunk booth, kids’ crafts, shopped the many craft booths, and bid on items in the silent auction.  Sandi did a great job generating awareness for the event and for Dercum’s Disease by securing news coverage on two different days.  Sandi was interviewed for the Friday 8.26.11 news and Tina Tranfaglia appeared on the Saturday 8.27.11 news.  In fact, two attendees showed up at the event specifically to ask questions about fat disorders that they suspected they might have.  Great job by Sandi and Keith–we hope this will become an annual event.

You can see the Saturday news coverage and video here.

See the Friday news coverage here. 

Hello everyone!  We wanted to make sure you had one last chance to participate in fundraisers and events that are finishing up soon.  Here is what you need to know through the end of August!

 
Macy’s Shop for a Cause–25% discount shopping pass

Tomorrow 8/22 is the last day to order your Macy’s coupon booklet from our website, so that we have time to mail it to you before Saturday, Aug 27.

How it works:  you buy a $5 savings pass to Macy’s for Saturday, August 27, which entitles you to 25% off regular and sale items that day.  The coupons are good online and in stores nationwide, and there will even be fun events and raffles in store that day.  You can learn all about it and order your coupon booklet here.  100% of the sale proceeds benefit the FDRS Research Fund.  Macy’s is surprisingly affordable, carries a great selection of larger sized clothing, and the event is just in time for back-to-school shopping at a steep discount!  Many thanks to Dawn for organizing, to Amy, Jan, and Joan for volunteering to sell coupon booklets, and thanks to all who have purchased so far!  Now don’t forget to go shopping next Saturday!

Scentsy Fundraiser

Jean-Marie Warren, an independent Scentsy consultant and Dercum’s patient, has once again offered to donate 10% of the proceeds from sales of Scentsy warmers and scents to Dercum’s research and awareness activities.

Good on all sales made online through  https://sweetscents4life.scentsy.us from August 1 until Tuesday, August 30.  This fundraiser is being offered through Cure Dercums and Jean-Marie Warren, and the research proceeds will be donated to the new Dercum’s Research Fund at FDRS.

Summer Craft Show and Family Festival in Fairfield, IA

This fun event is next Saturday, August 27, 2011, 9:30-5:30

Where:  Sandi and Keith Dimmitt’s Farm, Oak Slope Designs and Cutting Gardens, 2299 Mint Blvd., Fairfield, IA (southeast Iowa, 4 hrs from Chicago)

Hosted by Sandi and Keith Dimmitt to benefit the FDRS Research Fund.  Events include Craft Vendors, Kid and Adult games/contests with prizes, Food Vendors, Silent Auction, and more.  Tina Tranfaglia will definitely be there representing FDRS!  Can we convince anyone else from the surrounding states to go?

And don’t forget that the 3rd Annual Canadian, TX 5K and Luncheon is coming up in just a few weeks, on Saturday, September 10, 2011.  Many of our FDRS board members will be there–Dr. Karen Herbst, Jan Caise, and Kristi Lowery (the host).

EXTENDED:  Just Five Fundraiser for Cure Dercum’s

When:  Online now through August 15th

Visit the new Cure Dercum’s site, hosted by Diane Muffett and Janet Mullen to contribute $5 or more to their first fundraiser.  All proceeds will go directly into a special Dercum’s Disease Research Fund that has been set up at FDRS.  They are doing a great job spreading awareness of Dercum’s Disease, providing information, and rallying the community to show how just a little help from everyone makes a big difference to research into Dercum’s Disease.

Macy’s Shop for a Cause

When:  coupon booklets sold now through August 22. Shop for a Cause Day is Saturday, August 27, at Macy’s stores nationwide and online.

How it works:  you buy a $5 savings pass to Macy’s for Saturday, August 27, which entitles you to 25% off regular and sale items that day.  The coupons are good online and in stores, and there will even be fun events and raffles in store that day.  You can learn all about it and order your coupon booklet here.  100% of the proceeds benefit the FDRS Research Fund.  Macy’s is surprisingly affordable and this is a great chance to do back-to-school shopping at a steep discount!

Organized by Dawn Herbst.  We need your help not only buying coupon booklets, but helping to sell them to friends and family as well.  Last year, we were able to raise over $2200 from this event and a similar one from Lord & Taylor.  We will give you everything you need to be successful selling booklets.  Email donations@fatdisorders.org if you are interested in helping.

The Popular Scentsy Fundraiser is Back!

Jean-Marie Warren, an independent Scentsy consultant and Dercum’s patient, has once again offered to donate 10% of the proceeds from sales of Scentsy warmers and scents to Dercum’s research and awareness activities.

When:  Good on all sales made online through  https://sweetscents4life.scentsy.us from August 1 until Tuesday, August 30.

Use this opportunity to get a jump start on your CHRISTMAS SHOPPING! Or order some delightful new scents for Autumn.

This fundraiser is being offered through Cure Dercums and Jean-Marie Warren, and the research proceeds will be donated to the new Dercum’s Research Fund at FDRS.

Summer Craft Show and Family Festival

When:  Saturday, August 27, 2011, 9:30-5:30

Where:  Sandi and Keith Dimmitt’s Farm, Oak Slope Designs and Cutting Gardens, 2299 Mint Blvd., Fairfield, IA (southeast Iowa, 4 hrs from Chicago)

Hosted by: Sandi and Keith Dimmitt to benefit the FDRS Research Fund.

Craft Vendors, Kid and Adult games/contests with prizes, Food Vendors, Silent Auction, and more.

Rumor has it that Tina Tranfaglia is slotted for time in the dunk tank!  For information, contact sandidimmitt@mac.com

3rd Annual Canadian, TX 5K and Luncheon

When: Saturday, September 10, 2011

Where:  Canadian, TX (about 2 hrs from Amarillo in the panhandle).

Hosted by:  Kristi Lowery to benefit the FDRS Research Fund

Start with a scenic 5K run around Canadian, TX and end with a fun luncheon, speakers, and silent auction event.  Each year, this event gets bigger and bigger!

This event is hosted by the Rhode Island Dercum’s Society and benefits Dr. Karen Herbst’s research fund at UCSD (not FDRS).

Please join in for a friendly round of golf to help research Dercum’s Disease! We once again are featuring two courses to play!  Can’t or don’t want to play? You can sponsor a hole for $50!

When: Saturday, October 8, 2011, Shotgun at 1:00pm, Registration @ 11:30am

Please contact Peter Lyons at (401) 345-3134 for more information.

To reserve your spot, complete the form below and return it with your check:

Make checks payable to: RI Dercum’s Research Fund.
Mail to: Peter Lyons, 89 Kiwanee Road, Warwick, RI 02888
Email: PJL1889@verizon.net

***************************************************************************************
Registration Form (All fees are due in full with registration form) HDCP per 9 holes!

Pick One Golf Course:  Midville______        West Warwick________  
We will make every effort to get you on your chosen course but all requests may not be granted

Golfer 1: ____________________________________HDCP____ Phone: __________________________

Email:_____________________________________________________________

Other Golfers (if registering more then one):

2. ______________________________HDCP______

3. ______________________________HDCP________

4. ______________________________HDCP_______

GAS CART NEEDED   Yes    No.  How Many?___________ (Limit two per foursome)
                                   
We will let you know as more events get planned.  In the meantime, we hope you will be able to participate in an event near you!  And don’t forget, a great way to help raise money is to set up a Wish on our Facebook Cause Page (Help FDRS Stop the Hurt). By asking friends and family to contribute a small amount to honor your wish (such as a birthday or anniversary), you can make a huge impact. Several recent Wishes have raised thousands of dollars and it allows your friends and family to learn about your disorder and help to find a cure.

There is so much going on in our community that it is time for another update!

Heidi Sykora named Conference Leader for next FDRS Conference

We are pleased to announce that Ms. Heidi Sykora has been selected to lead the planning for the next FDRS Conference.  She was chosen from among 3 finalists, including Cathy Cameron and Mary Rose Accetturo, all of whom have great qualifications and great ideas.  It is heartwarming to see so many people stepping up to take an active role in this huge endeavor.  Heidi will coordinate a large team of volunteers to help us continue to enhance the content and attendance of each conference.  Heidi lives in the Milwaukee area, but was born in raised near Chicago.  The exact location and date for the next conference has not been chosen, but we anticipate it will be in the suburbs of Chicago, possibly in Fall 2012.  The only thing we know for sure right now is that it will not be held at the Sheraton Suites Elk Grove Village, as our attendance will exceed the space they have available.  In case you are wondering, our DVD of the 2011 conference is almost ready, so we will be announcing its availability soon!

3rd Annual Irish Poker Run Canceled for July 31

We had previously announced that the Rhode Island Dercum’s Society would be holding its annual poker run this coming weekend in Warwick, RI.  Unfortunately, venue problems arose and the event had to be canceled.

Amazing Acquisition of Dr. Dercum’s Original Papers

If you are not active on one of the Facebook support groups for Dercum’s Disease, you may have missed the amazing discovery that played out over the past few days.  A member of the community found an Ebay listing for a chest full of Dr. Francis Dercum’s original papers.  Several other patients  wrote to the seller to inform him of the devastating effects of having Dercum’s Disease and how valuable the collection would be to our community; after a few days of negotiation, one of our community members secured the collection for $2200 (far less than the $10,000 Buy It Now price originally sought).  This patient and Dr. Herbst contributed to the purchase.  Many patients are now rallying together to donate to this cause to offset the costs.  If you would like to contribute, please visit Dr. Herbst’s website for more information.  The chest was shipped to Dr. Herbst today and she anxiously awaits the opportunity to go through its contents.

Volunteers Needed ASAP for Macy’s Shop for a Cause Fundraiser

You can help raise critical research dollars for FDRS from the comfort of your own home.   Saturday, August 27 is Macy’s Shop for a Cause Day.  We need as many volunteers as we can get to simply ask friends, family and neighbors to support FDRS by purchasing a Macy’s coupon booklet (each booklet costs $5 and FDRS gets to keep every dollar).  Purchasers get a 25% savings pass good all day 8.27.11, online and in Macy’s stores nationwide.  It’s that easy.  You can send your friends and relatives an email and direct them to buy the discount coupon booklet on our site, or we can ship booklets to you to sell in person.  We will give you everything you need to be successful.  Imagine how much money we can raise nationwide if we all work together!  Not only does it offer a great discount in time for back-to-school shopping, but it presents an opportunity to inform your friends and relatives about your rare adipose disorder (RAD).  If you can help with this, send a note to info@fatdisorders.org.  Dawn Herbst is the coordinator for this annual fundraising event.

Linda-Anne Kahn and Beauty Kliniek Need Your Vote!

If you attended the annual FDRS conference in April, you met Linda-Anne Kahn, who led a fabulous 4-hour workshop on how to manage your RAD.  Linda-Anne is also the proud owner of Beauty Kliniek Day Spa and Wellness Center in San Diego.  Currently, Channel 10 is holding a contest for the best local businesses.  Her spa has been selected as the best day spa in San Diego twice before and we want to help her get selected a third time.  To vote for Beauty Kliniek, click here.   You can vote in the day spa, massage, or facial category.

FDRS Establishing Research Funds for each RAD

We are just in the early stages, but we are establishing a research fund for each of the 4 RADs that we support–Lipedema, Dercum’s Disease, FML, and Madelung’s Disease.  That way, if someone wants to make a donation or host a fundraiser for a specific RAD, we can put the proceeds towards research into that disorder specifically.  We will always have a general/overall RAD Research Fund for sponsoring research that benefits all the RADs.  We have also been asked to help establish memorial funds, with the proceeds going to one disorder or the other.  We are still working through the logistics and legalities of getting all these funds set up.  Stay tuned for more details!

Thanks for being an important part of our community.  Please visit our store to see all the new items that we have added.

The writing on the bag says “I CARRY HOPE FOR A CURE” and lists the 4 RADs, along with the FDRS website.

“Help Cure RADs!

www.fatdisorders.org”

The pen also features a green comfort grip and sleek black trim.  The ink is black as well.

How does it work? The human body has very low-level bioelectric currents that play a role in healing.  Trauma changes the electrical potential of cells in damaged tissue (such as lipoma fat), and therefore those damaged areas do not heal well.  Traditional electrical charges placed on the body travel around the traumatized cells too, thus not aiding healing.  Because MCT currents approximate naturally occurring bioelectric currents in the body, they effectively augment the tissues’ healing and repair capabilities.  As a result, patients experience less pain, and in some case, lipomas have shrunk.  MCT therapy is used extensively for cosmetic purposes, such as reducing the signs of aging, and it is FDA approved for this purpose.

Note that these are labeled as refurbished units.  They were originally sold on QVC and subsequently returned.  In most cases, they were never even used, but the Nu Face company cannot sell them as new units.  The kit includes the NuFace MCT machine, 9 volt battery, 2 tubes of conductivity gel (normally only includes one), DVD and instruction sheets, and priority shipping.

Cupcakes and Cocktails

When:  Sunday, July 24, 2011, 1-4 pm

Where:  Del Mar Power House, 1658 Coast Blvd, Del Mar, CA

Hosted by:  La Jolla New Generations Rotary Club; all proceeds benefit Dr. Karen Herbst’s research fund.

Register online at sandiegocupcake.com, $25 includes 2 cupcakes, 2 cocktails, and a great time!

Attire is Dressy Casual.  Tickets limited to the first 120, no walk-ins.

4th Annual Irish Poker Run

When:  Sunday, July 31, 2011

Where: Flannagan’s Shannon View, 1901 Post Road, Warwick, RI

Hosted by Rhode Island Dercum’s Society; all proceeds benefit Dr. Karen Herbst’s research fund.

You can read more on the event page on Facebook.

Come and enjoy–bikers and non-bikers welcome!

Registration is at 9:30
Irish breakfast 9:30-11:30am
Run starts at 12 Noon

Cookout and music by Ray Renzi following the run

Pre-register via email to Jlyons@limittours.com
Name on the list $20.00, Pass $10.00
All pre-registrations get t-shirt
Day of run $25, Pass $15.00

First Fundraiser for Cure Dercum’s

When:  Online now through the end of July.

Visit the new Cure Dercum’s site, hosted by Diane Muffett and Janet Mullen to contribute $5 or more to their first fundraiser.  All proceeds will go directly into a special Dercum’s Research Fund that has been set up at FDRS.  They are doing a great job spreading awareness of Dercum’s Disease, providing information, and rallying the community to show how just a little help from everyone makes a big difference to research into Dercum’s Disease.

Summer Craft Show and Family Festival

When:  Saturday, August 27, 2011, 9:30-5:30

Where:  Sandi and Keith Dimmitt’s Farm, Oak Slope Designs and Cutting Gardens, 2299 Mint Blvd., Fairfield, IA (southeast Iowa, 4 hrs from Chicago)

Hosted by: Sandi and Keith Dimmitt to benefit the FDRS Research Fund.

Craft Vendors, Kid and Adult games/contests with prizes, Food Vendors, Silent Auction, and more.

Rumor has it that Tina Tranfaglia is slotted for time in the dunk tank!  For information, contact sandidimmitt@mac.com

Macy’s Shop for a Cause

When:  coupon booklets sold now through August 26. Shop for a Cause Day is Saturday August 27, in stores and online.

How it works:  you buy a $5 coupon booklet for great discounts to Macy’s on Saturday, Ausust 27.  The coupons are good online and in stores, which will have all kinds of fun events throughout the stores that day.

100% of the proceeds benefit the FDRS Research Fund.

Organized by Dawn Herbst.  More info to follow shortly in a separate posting.  We need your help not only buying coupon booklets, but helping to sell them to friends and family.  Last year, we were able to raise over $2200 from this event and a similar one from Lord & Taylor.

3rd Annual Canadian, TX 5K and Luncheon

When: Saturday, September 10, 2011

Where:  Canadian, TX (about 2 hrs from Amarillo in the panhandle).

Hosted by:  Kristi Lowery to benefit the FDRS Research Fund

Start with a scenic 5K run around Canadian, TX and end with a fun luncheon, speakers, and silent auction event.  Each year, this event gets bigger and bigger!

We will let you know as more events get planned.  In the meantime, we hope you will be able to participate in an event near you!  And don’t forget, a great way to help raise money is to set up a Wish on our Facebook Cause Page (Help FDRS Stop the Hurt). By asking friends and family to contribute a small amount to honor your wish (such as a birthday or anniversary), you can make a huge impact. Several recent Wishes have raised thousands of dollars and it allows your friends and family to learn about your disorder and help to find a cure.