Updates

• 
  Tiffany Howe Lymphedema Treatment Act Update:
  
  The Lymphedema Advocacy Group's 2014 Lymphedema Lobby Days took place on September 8th and 9th. Eighty-five patient advocates participated from the following 24 states, plus the District of Columbia: AZ, CA, FL, GA, ...  moreLymphedema Treatment Act Update:
  
  The Lymphedema Advocacy Group's 2014 Lymphedema Lobby Days took place on September 8th and 9th. Eighty-five patient advocates participated from the following 24 states, plus the District of Columbia: AZ, CA, FL, GA, IA, IL, KS, KY, MA, MD, MI, MO, NC, NJ, NV, OH, PA, SC, TN, TX, UT, VA, WA and WI.
  
  To educate Congress about lymphedema and raise support for the Lymphedema Treatment Act, our advocates met with approximately 150 individual offices over the course of two days. These meetings had been scheduled in advance, and included both Senate offices for each participating state, plus all or some of the House offices from those states.
  
  Participants also delivered information to all Senate and nearly all House offices with which we did not have a scheduled meeting. At these "drop-ins" our advocates were sometimes lucky to be granted an impromptu meeting, which are not included in the meeting total above. It's incredible to think that we reached almost all 535 congressional offices on this, our biggest and best trip to date!
  
  One of the highlights of our two days on the Hill was our Congressional Briefing on Tuesday the 9th. All of our nearly forty participating patients, ranging in age from 9 to 71, took part in the briefing to represent the "face of lymphedema." The briefing was video taped, and once we have it edited we will share it with all of you, as well as with congressional offices that were unable to attend.
  
  In the week following the close of our 2014 Lymphedema Lobby Days and we gained an additional 13 cosponsors as a direct result of our visit to DC! And there will likely be even more to come, as offices continue to deliberate over information they have received. (You can see the current list of House cosponsors here - https://beta.congress.gov/ bill/113th-congress/house- bill/3877/cosponsors .)
  
  We were delighted with the level of interest from Senate offices too. Our bill has not yet been introduced in the Senate, and we are in continuing communication with several of the offices we met with regarding their interest in introducing our bill. This is a process that will take some time, but our goal is to have active bills in both the House and Senate during the next Congress, which begins January 2015.
  
  This trip really underscored the importance of direct communication from constituents. I cannot stress enough how important personal communication from you is! Please call your members of Congress at your earliest convenience, to help us build on the momentum we have gained from this trip. Better yet, ask for a meeting at their district office while they are home campaigning during the month of October!
  
  Talking points and FAQ's are available on this concise two-page document - https:// lymphedematreatmentact.capwiz. com/filemanager/file-mgr/ lymphedematreatmentact/ Meeting_Pointers___FAQ_s.pdf . The number to your Representative's office can be located here ( http://www.house.gov/ representatives/ ) and to your Senators' offices here ( http://www.senate.gov/ general/contact_information/ senators_cfm.cfm ). If attending a meeting, be sure to print and take them this Congressional Information Packet - http://lymphedematreatmentact. org/wp-content/uploads/2014/ 08/Lymphedema_Treatment_Act_ HR3877.pdf .
  
  We would like to thank our patient advocates who participated in this year's Lymphedema Lobby Days - they did a tremendous job! In the coming weeks we will be posting quotes and photos from them on the Lobby Days page of our website. Some can already be found on our Facebook page - https://www.facebook.com/ pages/Lymphedema-Treatment- Act/186268221410801?created .
  
  We hope even more of you will be able to join us on our next trip. But right now, remember that you can make a difference by contacting your Congressional offices, and building on the foundation we have laid. Please call them today and tell them how important to you the Lymphedema Treatment Act is!
  
  Thank you for your continued support,
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • September 18, 2014
• 
  Tiffany Howe New Lymphedema Treatment Act Video!
  
  We are proud to share with you a new 5 minute video to help raise awareness about lymphedema and the Lymphedema Treatment Act! After you watch the video on YouTube, please share it with others to help spread the...  moreNew Lymphedema Treatment Act Video!
  
  We are proud to share with you a new 5 minute video to help raise awareness about lymphedema and the Lymphedema Treatment Act! After you watch the video on YouTube, please share it with others to help spread the word - https://www.youtube.com/watch? v=npYqXBz2YvE&feature=youtu.be
  
  And remember, a Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held on Tuesday, September 9th . We need you to do everything you can to make sure your members of Congress attend this briefing!
  
  We hope you have already written your members of Congress through the form on our website - http://www.capwiz.com/ lymphedematreatmentact/home/ . Now, please make a follow-up phone call to their DC offices this week, to make sure they plan to attend.
  
  
  To call your Representative - http://www.house.gov/ representatives/  
  
  To call your Senators - http://www.senate.gov/general/ contact_information/senators_ cfm.cfm
  
  We need you to call on or before Monday, September 8th , because our briefing is the 9th. Thanks for helping us to educate Congress about lymphedema and the importance of passing the Lymphedema Treatment Act!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
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  Preview YouTube video Lymphedema Treatment Act - JOIN US!
  
  
  
  
  
  
  
  
  
  Lymphedema Treatment Act - JOIN US!  less

  • September 1, 2014

  • Staff Certified Lymphedema Therapist likes this.
• 
  Tiffany Howe Lymphedema Treatment Act - Special Announcement:
  
  A Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held on September 9th . Please contact your members of Congress today, urging them to attend this...  moreLymphedema Treatment Act - Special Announcement:
  
  A Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held on September 9th . Please contact your members of Congress today, urging them to attend this briefing!
  
  Click here to send your message - http://www.capwiz.com/ lymphedematreatmentact/issues/ alert/?alertid=63277111&type= co . 
  
  
  A template letter inviting them to this briefing is provided; all you need to do is complete your name and address. Even if you have written recently, or if your Representative is already a cosponsor, these offices need to hear from you again right now.
  
  Please contact your members of Congress today, then pass this on and ask others to do the same - http://www.capwiz.com/ lymphedematreatmentact/issues/ alert/?alertid=63277111&type= co .
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • August 21, 2014
• 
  Tiffany Howe Lymphedema Treatment Act Update:
  
  
  The August recess is a prime opportunity for you to meet with your Representative in person, share a bit about lymphedema, and urge him or her to cosponsor the Lymphedema Treatment Act! ...  moreLymphedema Treatment Act Update:
  
  
  The August recess is a prime opportunity for you to meet with your Representative in person, share a bit about lymphedema, and urge him or her to cosponsor the Lymphedema Treatment Act!
  
  
  Please check your Representative's website for Town Hall events in your area, or call his or her office to ask. If you prefer a personal meeting, please contact your nearest district office ASAP to get one scheduled. To look up your Representative's website and district office information visit - http://www.house.gov/ representatives/find/ .
  
  
  If you are unable to attend an in-person event or meeting, please call your Rep's DC office and speak to the Health Aide about the bill. Congress is on recess, but staff isn't. Detailed information and advice for making this phone call is in our Advocacy Handbook - http://lymphedematreatmentact. org/advocacy-handbook/ .
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • August 4, 2014
• 
  Tiffany Howe Final weeks to register for Lymphedema Lobby Days!
  
  
  Our 2014 Lymphedema Lobby Days will be taking place September 7th-9th in Washington, DC. We’d love for you to join us - no experience is necessary and everyone is welcome!  ...  moreFinal weeks to register for Lymphedema Lobby Days!
  
  
  Our 2014 Lymphedema Lobby Days will be taking place September 7th-9th in Washington, DC. We’d love for you to join us - no experience is necessary and everyone is welcome! 
  
  
  Participants will educate Congress and members of their staff about lymphedema and the importance of access to proper treatment, while raising support for the Lymphedema Treatment Act.
  
  
  Complete information and a link to register can be found one the Lobby Days page of our website -  http:// lymphedematreatmentact.org/ lymphedema-lobby-days/ . 
  
  
  The registration deadline is August 7th , so don’t delay. We hope to see you there!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • July 5, 2014
• 
  Tiffany Howe Lymphedema Treatment Act Update
  
  
  Lobby Days: ...  moreLymphedema Treatment Act Update
  
  
  Lobby Days:
  
  
  Our Lobby Days are fast approaching! If you haven't signed up yet, we'd love for you to join us September 7th - 9th in Washington, DC. So far we have 42 registered participants from 18 different states. Complete information is on the Lobby Days page of our website ( http:// lymphedematreatmentact.org/ lymphedema-lobby-days/ ). 
  
  
  Cosponsor Count:
  
  
  We have 60 cosponsors to date. Click here to see if your Representative is among them ( http://beta.congress.gov/ bill/113th-congress/house- bill/3877/cosponsors ). If he or she is not yet a cosponsor, please use the step-by-step advice in our Advocacy Handbook to make it happen ( http:// lymphedematreatmentact.org/ advocacy-handbook/ ).
  
  
  New Endorsements:
  
  
  We have two new Endorsements - The National Patient Advocate Foundation ( http://www.npaf.org ) and the Wound, Ostomy and Continence Nurses Society ( http://www.wocn.org ).
  
  
  Facebook | Twitter | Tell-A-Friend:
  
  
  Please "like" our Facebook page ( https://www.facebook.com/ pages/Lymphedema-Treatment- Act/186268221410801?created ), follow us on Twitter ( https://twitter.com/ LymphedemaACT1 ), and spread the word by using our Tell-A-Friend form ( http://www.capwiz.com/ lymphedematreatmentact/taf/ ). 
  
  
  Thanks for your continued support!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • June 21, 2014
• 
  Tiffany Howe Lymphedema  Treatment Act Update:
  
  
  Our Lobby Days are less than three months away! If you haven't signed up yet, we’d love for you to join us September 7th - 9th in Washington, DC. ...  moreLymphedema  Treatment Act Update:
  
  
  Our Lobby Days are less than three months away! If you haven't signed up yet, we’d love for you to join us September 7th - 9th in Washington, DC.
  
  
  So far we have 40 registered participants from 17 different states. Complete information is on the Lobby Days page of our website - http://lymphedematreatmentact. org/lymphedema-lobby-days/ .
  
  
  We have 55 cosponsors to date. Click here to see if your Representative is among them - http://beta.congress.gov/bill/ 113th-congress/house-bill/ 3877/cosponsors .
  
  
  If he or she is not yet a cosponsor, please use the step-by-step advice in our Advocacy Handbook to make it happen - http://lymphedematreatmentact. org/advocacy-handbook/ .
  
  
  We hope your summer is off to a wonderful start!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • June 16, 2014
• 
  Tiffany Howe is now friends with Molly Brudnick.

  • June 2, 2014
• 
  Tiffany Howe Lymphedema Treatment Act Update:
  
  
  The LTA was recently endorsed by the American Academy of Physical Medicine and Rehabilitation! This is an important milestone for us because it is the first physicians group to join our list of supporting...  moreLymphedema Treatment Act Update:
  
  
  The LTA was recently endorsed by the American Academy of Physical Medicine and Rehabilitation! This is an important milestone for us because it is the first physicians group to join our list of supporting organizations.
  
  
  
  We now have a page on our website dedicated to our new Advocacy Handbook, which has step-by-step instructions and advice on how to secure your own Representative as one of our cosponsors ( http:// lymphedematreatmentact.org/ advocacy-handbook/ ).
  
  
  We still need your help spreading the word, and will gladly send you free information cards to distribute in your area. You can place your order by following the link on our Raising Awareness page ( http:// lymphedematreatmentact.org/ increase-awareness/ ).
  
  
  And we'd love for you to join us in Washington DC at our 2014 Lymphedema Lobby Days, September 7th-9th . No experience is necessary and everyone is welcome. The more participants we have, the more offices we can visit, and the more support we can raise for the LTA!
  
  
  Complete information is available on the Lobby Days page of our website ( http:// lymphedematreatmentact.org/ lymphedema-lobby-days/ ). We are just a bit more than three months out, so please don't delay in registering if you plan to join us.
  
  
  Thank you for your continued support!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • June 2, 2014
• 
  Tiffany Howe The NW Lymphedema Center, a regional non-profit dedicated to lymphedema education, awareness and training in self-care in WA State, is collaborating with Harmony Hill in western Washington on the Hood Canal to provide a Retreat for Women with...  moreThe NW Lymphedema Center, a regional non-profit dedicated to lymphedema education, awareness and training in self-care in WA State, is collaborating with Harmony Hill in western Washington on the Hood Canal to provide a Retreat for Women with Lymphedema (from any cause).  This will occur on May 16th-18th, 2014.
  
  It is open to all women with lymphedema and is cost-free to the participants.  (They must put up a $100 deposit but get it back when they show up, just to make sure spaces are not left unused.) 
  
  Here is the link to more information:  http://www.nwlymphedemacenter. org/retreat.htm
  
  http://www.harmonyhill.org/ node/26  less

  • April 14, 2014
• 
  Tiffany Howe Subject: Lymphedema Lobby Days
  
  
  The Lymphedema Advocacy Group invites you to join us in Washington DC, September 7 th -9 th , for our 2014 Lymphedema Lobby Days! ...  moreSubject: Lymphedema Lobby Days
  
  
  The Lymphedema Advocacy Group invites you to join us in Washington DC, September 7 th -9 th , for our 2014 Lymphedema Lobby Days!
  
  
  This is a unique opportunity to help raise awareness, educate Congress about lymphedema, and increase support for the Lymphedema Treatment Act.
  
  
  An orientation reception will be held on Sunday evening, Sept. 7th . Monday and Tuesday, Sept. 8th and 9th , will be full days on the Hill. We encourage you to participate in both days if possible. A hotel group rate is available for Sept 7th-10th .
  
  
  Complete information is available on the Lobby Days page of our website - http://lymphedematreatmentact. org/join-us-in-dc-2011- lymphedema-lobby-days/
  
  
  No experience is required, and we hope to see many of you there!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • April 1, 2014
• 
  Tiffany Howe Lymphedema Treatment Act Update
  
  
  We have gained 15 cosponsors since the bill was introduced on January 15th . They...  moreLymphedema Treatment Act Update
  
  
  We have gained 15 cosponsors since the bill was introduced on January 15th . They are:
  
  (CA-5) Mike Thompson; (CA-18) Anna Eshoo; (CA-19) Zoe Lofgren; (CT-2) Joe Courtney; (IA-1) Bruce Braley; (IA-3) Tom Latham; (MO-1) Wm. Lacy Clay; (NC-3) Howard Coble; (NJ-7) Leonard Lance; (OR-3) Earl Blumenauer; (OR-4) Peter DeFazio; (TN-1) David "Phil" Roe; (WA-1) Suzan DelBene; (WA-7) Jim McDermott
  (VA-11) Gerald Connolly.
  
  This is a great start, but we still have a long way to go! 
  
  
  If you haven't already, write your Rep today using the submission form on our website - http://www.capwiz.com/ lymphedematreatmentact/home/ .
  
  
  If you have already written, you’ve probably received, or will receive, a "form letter" response that will read something like this:
  
  The letter will name the bill, then the committees it was referred to. It will go on to tell you a bit about lymphedema and about what the bill would do. And it will say something to the effect of keeping your thoughts in mind should the bill come to the floor for a vote.
  
  Do not be satisfied with a noncommittal form letter! We must have many more cosponsors for our bill to be moved forward. Please follow-up with a phone call. I cannot stress enough how important this is! 
  
  
  You can look up the number to your Representative's DC office here - www.house.gov/representatives/ find . Ask to speak to the aide in charge of health legislation. It is unlikely that you will be transferred to him or her, so have a pre-planned and concise message ready, such as this one:
  
  
  "My name is (your name). I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with the health aide about the merits of this bill. Could he or she please return my call? My phone number is (your number)."
  
  Persistence is the key. Thank you for your continued support!
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org
  info@LymphedemaTreatmentAct. org  less

  • March 1, 2014

  • Staff Certified Lymphedema Therapist likes this.
• 
  Tiffany Howe Lymphedema Treatment Act Update:
  
  
  Have you written your Representative since the LTA was introduced on January 15th? If not, please use the quick and easy submission form on our website to send your letter today. Just click the "Take Action" button...  moreLymphedema Treatment Act Update:
  
  
  Have you written your Representative since the LTA was introduced on January 15th? If not, please use the quick and easy submission form on our website to send your letter today. Just click the "Take Action" button on this page - http://www.capwiz.com/ lymphedematreatmentact/home/ .
  
  Once you've written, we encourage you to follow up with a phone call. You can look up the number to your Representative's DC office here - www.house.gov/representatives/ find . Ask to speak to the aide in charge of health legislation. It is unlikely that you will be transferred to him or her, so have a pre-planned and concise message ready, such as this one:
  
  "My name is (your name). I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with the health aide about the merits of this bill. Could he or she please return my call? My phone number is (your number)."
  
  By next month's Newsletter we will know which Representatives have been among the first to sign on as cosponsors, and I will share that list with you. Please do whatever you can to get your Representative's name on that list.
  
  And remember to spread your influence. Ask everyone you know, in any state, to write a letter. Constituent contact makes all the difference!
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • January 28, 2014
• 
  Tiffany Howe The Lymphedema Treatment Act has been reintroduced in Congress!
  
  
  All our hard work and preparation over this past year has come to fruition! On January 15th  the Lymphedema Treatment Act was introduced into the 113th Congress (bill number HR 3877) by...  moreThe Lymphedema Treatment Act has been reintroduced in Congress!
  
  
  All our hard work and preparation over this past year has come to fruition! On January 15th  the Lymphedema Treatment Act was introduced into the 113th Congress (bill number HR 3877) by our lead sponsor, Rep. Reichert (R-WA), and co-leads Rep. Lance (R-NJ), Rep. Blumenauer (D-OR), and Rep. Braley (D-IA).
  
  You can read a very moving press release that includes quotes from each of these members of Congress here - http://reichert.house.gov/ press-release/reichert- introduces-critical- legislation-improve- healthcare-lymphedema-patients . This introduction brings us to a new starting line.
  
  Now we need your help asking all members of Congress to support this bill!
  
  Please take 5 minutes to send a letter to your Representative, asking him/her to cosponsor this bill, by using the submission form on our website - http://www.capwiz.com/ lymphedematreatmentact/home/ . A brief template letter is provided, but please make your letter even more effective by adding one personalized paragraph reflecting your own perspective and experiences.
  
  I would like to extend a special "thank you" to our State Teams in WA, NJ, OR, and IA, whose efforts procured this bipartisan group of strategically chosen Representatives to introduce our bill. Now it's your turn to make a difference. Even if your Representative cosponsored the LTA in the 112th Congress, he or she must do so again because bills and cosponsors do not carry over from one Congress to the next.
  
  Thank you in advance for writing your Representative today, urging him or her to cosponsor the LTA, and when you're done you can use our Tell-A-Friend form to ask others to do the same! Please send your letter now at http://www.capwiz.com/ lymphedematreatmentact/home/ .
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org
  info@LymphedemaTreatmentAct. org  less

  • January 16, 2014
• 
  Tiffany Howe NJ has introduced a state lymphedema treatment mandate! 
  
  
  Our NJ Team has been busy, indeed, because, in addition to their work building support for the Lymphedema Treatment Act, they also succeeded in getting a NJ state lymphedema...  moreNJ has introduced a state lymphedema treatment mandate! 
  
  
  Our NJ Team has been busy, indeed, because, in addition to their work building support for the Lymphedema Treatment Act, they also succeeded in getting a NJ state lymphedema treatment mandate introduced in 2013. A copy of this bill can be read here . If you live in NJ, please consider joining your State Team because they could really use your help. 
  
  CA insurance "Marketplace" plans begin covering compression supplies today! 
  
  The Patient Protection and Affordable Care Act stipulates that all new insurance policies offered in the “Marketplace” must cover certain “essential benefits.” In anticipation of the need to provide further guidelines to California insurers who would be selling plans through the exchange, the CA Department of Managed Health Care added a new section to Title 28 of the California Code of Regulations. In this new section it lists devices required to be covered, including "lymphedema wraps and garments"! You can read more detailed information about this new law, and how lymphedema supplies came to be included, here . I would like to extend our thanks and congratulations to Bob Weiss, a long-time patient advocate in CA, whose efforts have made such a difference in CA and the nation. 
  
  
  
  Join your state's team! 
  
  
  
  This marks the first anniversary of our State Teams. We've reached 279 team members in 41 states, representing approximately 70 Congressional districts in the nation. It's a great start, but we need at least one team member in each of the 435 Congressional districts. We still need to grow our teams to represent 365 more Congressional districts. Will you help us get there? If you are not already a member of your state's team please consider joining this grassroots effort to give a voice in Congress to lymphedema patients and all who care about them. Click here to join or learn more. 
  
  
  
  Come to DC to take part in our 2014 advocacy days! 
  
  
  
  We are just beginning to plan for this year's trip, which will be held September 7th-9th . We will announce additional information as it becomes available. Click here to read what participants had to say about our last trip. 
  
  
  
  Thank you in advance for helping us to accomplish more great things in 2014! 
  
  
  
  
  Heather Ferguson 
  Founder and Executive Director 
  Lymphedema Advocacy Group 
  www.LymphedemaTreatmentAct.org  
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  • January 3, 2014

  • Robbie Summers likes this.
• 
  Tiffany Howe Lymphedema Treatment Act Update and Other Exciting Lymphedema-Realted News: 
  
  
  * Reintroduction of the Lymphedema Treatment Act is near!...  moreLymphedema Treatment Act Update and Other Exciting Lymphedema-Realted News: 
  
  
  * Reintroduction of the Lymphedema Treatment Act is near!
  
  
  In the final days before Congress broke for recess, our bill sponsor, Rep Reichert (WA), approached three other members of the House, Rep Braley (IA), Rep Blumenauer (OR), and Rep Lance (NJ), to ask them to introduce the LTA bill with him as original "co-leads." These three members were carefully selected based on their committee assignment, party affiliation and support for the issue. Our goal is to have bipartisan support in both "committees of jurisdiction" (through which the bill must first pass). 
  
  
  Thanks to our State Team members in Iowa and Oregon, Reps Braley and Blumenauer have already said "yes"!  Our NJ Team is still working to secure a "yes" from Rep Lance soon after Congress returns to work on Jan 6th . Once our final co-lead is secured we will be ready to introduce the bill.
  
  
  * NJ has introduced a state lymphedema treatment mandate!
  
  
  Our NJ Team has been busy, indeed, because, in addition to their work building support for the Lymphedema Treatment Act, they also succeeded in getting a NJ state lymphedema treatment mandate introduced in 2013. A copy of this bill can be read at ftp://www.njleg.state.nj.us/ 20122013/A4500/4161_I1.PDF . If you live in NJ, please consider joining your State Team  because they could really use your help - http://lymphedematreatmentact. org/join-an-advocacy-team-in- your-state/ .  
  
  
  * CA insurance "Marketplace" plans begin covering compression supplies January 1st!
  
  
  The Patient Protection and Affordable Care Act stipulates that all new insurance policies offered in the “Marketplace” must cover certain “essential benefits.” In anticipation of the need to provide further guidelines to California insurers who would be selling plans through the exchange, the CA Department of Managed Health Care added a new section to Title 28 of the California Code of Regulations.
  
  
  In this new section it lists devices required to be covered, including "lymphedema wraps and garments"! You can read more detailed information about this new law, and how lymphedema supplies came to be included, here - http://www.lymphactivist.org/ ca_garment_coverage.php . We would like to extend our thanks and congratulations to Bob Weiss, a long-time patient advocate in CA, whose efforts have made such a difference in CA and the nation.  
  
  
  * Join your state's advocacy team!
  
  
  This marks the first anniversary of our State Teams. We've reached 279 team members in 41 states, representing approximately 70 Congressional districts in the nation.  It's a great start, but we need at least one team member in each of the 435 Congressional districts. We still need to grow our teams to represent 365 more Congressional districts. Will you join and help us get there?  If you are not already a member of your state's team please consider joining this grassroots effort to give a voice in Congress to lymphedema patients and all who care about them. To join or learn more visit http://lymphedematreatmentact. org/join-an-advocacy-team-in- your-state/ .  
  
  
  * Come to DC to take part in our 2014 advocacy days!
  
  
  We are just beginning to plan for this year's trip, which will be held September 7th-9th . We will announce additional information as it becomes available. To read what participants had to say about our last trip visit http://lymphedematreatmentact. org/join-us-in-dc-2011- lymphedema-lobby-days/ . 
  
  
  Thank you in advance for helping us to accomplish more great things in 2014!  
  
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org
  info@LymphedemaTreatmentAct. org  less

  • January 1, 2014

  • 
    Robbie Summers What are the changes in this new act?

    • January 2, 2014
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    Tiffany Howe Robbie. We are on the brink of finally getting the bill introduced back into congress after a year of re-writing and getting co-sponsors. The second half of the news letter didn't copy. I will post the rest of it for you.

    • January 3, 2014
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    • 1 likes this
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    Robbie Summers Kool thx!! Keep me posted!

    • January 3, 2014
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    • 1 likes this
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  Tiffany Howe Lymphedema Treatment Act Update:
  
  The Lymphedema Advocacy Group is an all-volunteer organization. Each board member has a deep personal connection to this disease and spends countless hours advancing our mission ( http:// lymphedematreatmentact.org/...  moreLymphedema Treatment Act Update:
  
  The Lymphedema Advocacy Group is an all-volunteer organization. Each board member has a deep personal connection to this disease and spends countless hours advancing our mission ( http:// lymphedematreatmentact.org/ advocacy-team/ ). Our work means a great deal to us, and so does your support. 
  
  If you are able to include the Lymphedema Advocacy Group during this season of giving we would be extremely grateful. Every dollar really does make a difference to us! Secure donations can me made through PayPal ( http:// lymphedematreatmentact.org/ donate-financial-support/ ), or sent by mail to: Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.
  
  In case you missed our November update, we'd like to mention that you can request free information cards to distribute in your area using our new Information Card Request Form ( https://docs.google.com/ forms/d/13lUx2oGHqrWDh8_n77ZY_ Po7zwnG52vC7K1jYi3FNXM/ viewform ). 
  
  Through people like you, we have already distributed almost 90,000 information cards to raise awareness about lymphedema and the Lymphedema Treatment Act! Your support makes this, and all our work, possible.
  
  Happy Holidays!
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • December 1, 2013

  • Staff Certified Lymphedema Therapist and Cathy Harris like this.
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  Tiffany Howe is now friends with Theresa Lounsbery.

  • October 30, 2013
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  Tiffany Howe Lymphedema Treatment Act Update:
  
  One of the most fundamental challenges the lymphedema community faces is lack of awareness, even among medical professionals. Some of you have shared your Lymphedema Stories ( http:// lymphedematreatmentact.org/...  moreLymphedema Treatment Act Update:
  
  One of the most fundamental challenges the lymphedema community faces is lack of awareness, even among medical professionals. Some of you have shared your Lymphedema Stories ( http:// lymphedematreatmentact.org/ share-your-lymphedema-story/ ), which we feature on our blog ( http:// lymphedematreatmentact.org/ blog/ ), and far too many of them tell tales of misdiagnosis or delayed diagnosis.
  
  We are pleased to announce that it's now even easier to request some of the information cards we produce to educate people about lymphedema and the Lymphedema Treatment Act. We will happily send you these cards free of charge, so please click here to place your order - https://docs.google.com/forms/ d/13lUx2oGHqrWDh8_n77ZY_ Po7zwnG52vC7K1jYi3FNXM/ viewform .
  
  It saddens us to think about how many people are out there suffering needlessly because they haven't been diagnosed, or because their doctors did not know to refer them for proper treatment. Furthermore, few know of our effort to pass a law that will improve coverage for essential components of lymphedema treatment.
  
  Each of us must be our own advocate and take charge of spreading awareness in our community! Please think about applicable places you visit, or could visit, which would be willing to distribute these cards: doctor's offices, therapy offices, compression garment fitters, support groups, clinics, cancer facilities, etc. Estimate how many will be used at each site and consider your ability to refresh the supply from time to time, then simply place your order - https://docs.google.com/forms/ d/13lUx2oGHqrWDh8_n77ZY_ Po7zwnG52vC7K1jYi3FNXM/ viewform .
  
  Three years ago the Washington Post ran a story referring to lymphedema as "cancer's dirty little secret." The other non-cancer causes of lymphedema are hidden in even greater obscurity. It's time for us to bring lymphedema out of the shadows! Thank you in advance for doing your part to make the public aware of this disease.
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org  less

  • October 30, 2013

  • Staff Certified Lymphedema Therapist likes this.
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  Tiffany Howe Lymphedema Treatment Act Update:
  
  
  Does your Representative hold the fate of our bill in his/her hands?...  moreLymphedema Treatment Act Update:
  
  
  Does your Representative hold the fate of our bill in his/her hands?
  
  While the support of any member of Congress is important, some are especially important. These are the men and women who serve on one of the committees who will hold a hearing on our bill, or who hold high ranking positions within their party.
  
  To see a list of these key members of Congress click here - https://docs.google.com/ spreadsheet/ccc?key= 0AlxGlFG568S4dEMtUTg2ZUFjMWt1U Hp0Z09nWlM2VHc#gid=0 .
  
  Without these key members' support for moving the Lymphedema Treatment Act through committee it will never reach the floor for a full vote. Therefore, especially if your Representative or Senator is on this list, please consider joining your state's advocacy team.
  
  The State Teams page of our website now has more information and an easy sign-up form -  http:// lymphedematreatmentact.org/ join-an-advocacy-team-in-your- state/ . 
  
  And we need your continued help in raising awareness. Six easy ways are outlined here - http://lymphedematreatmentact. org/spread-the-word- distribute-this-flier-2/ .
  
  We hope everyone has had an enjoyable summer and thank you again for your continued support of the Lymphedema Treatment Act!
  
  The Lymphedema Advocacy Group
  www.LymphedemaTreatmentAct.org
  info@LymphedemaTreatmentAct. org  less

  • September 4, 2013