Latest News
A look at 2023:
January 24 - Massachusetts State House Meeting with Mental Health
Chair Adrian Madaro, Rep Rob Consalvo and Legislative Aide Emily Carrara.
2023 VITFriends Boston continues our BOOK READING Project with
plans to read in several after school programs, schools and Libraries.
A look at our Groups 2022 - 2023 Updates:
2023 - We are please to announce the addition of our BUFFALO NY
group and our Leader - Lisa Toner to our VITFriends family.
2022 - We are please to announce the addition of Three NEW groups
to our VITFriends family:
1. Houston Vitiligo Awareness Movement (HVAM) - Led by Diane
Tribitt and her Team
2. VITFriends Dallas - Led by Alison Houpt and Ebonee Bursey. Ebonee also Leads our CLUBHOUSE group.
3. VITFriends Baltimore City - Led by Mr and Mrs Johnson both
have VITILIGO
4. Boston/Corporate - VITFriends NEW Corporate Secretary/Bookkeeper is also our PPP co-leader - We WELCOME - Martine Burnsed
A look back at 2022:
Our October 21 visit with Congressman Jim McGovern
On February 28, 2022 our President/CEO Valarie Molyneaux accepted the invitation to speak at MASSBIO Rare Disease Day in Cambridge, Massachusetts! https://youtu.be/SUDp4Sp62RI
Our 13 years, PODCAST can be heard on
APPLE Podcast, Spotify, iHeart Radio, Blogtalkradio, with OVER 10,900 listeners globally! https://www.vitfriends.org/podcast-spotify
Boston WCVB TV 5, an ABC affiliate, reports on the new FDA treatment with Reporter Jessica Brown: https://www.youtube.com/watch?v=Y6vPxeIX6M4
FOX TV 9 Minnesota reports on the new FDA treatment: https://www.youtube.com/watch?v=lOlnTSM52DA
Incyte (7/18/22) announces the U.S. Food and Drug Administration (FDA) approval of Opzelura to treatment Vitiligo.
https://www.businesswire.com/news/home/20220718005819/en/Incyte-Announces-U.S.-FDA-Approval-of-Opzelura%E2%84%A2-ruxolitinib-Cream-for-the-Treatment-of-Vitiligo
CITY LINE is a Boston WCVB TV 5, award-winning weekly magazine program with Host Karen Holmes: https://www.youtube.com/watch?v=0hEKv5yVhmI
A look back at 2021:
* On March 8, 2021 FDA held the first ever Vitiligo Community HEARING...https://www.fda.gov/media/155068/download
JUNE is Vitiligo Awareness Month
2022:
* Hoping that ALL of our State groups will have received a 2022 PROCLAMATION!
* 2022 - ALL roads leads to Bloomington, MN for our World Vitiligo Conference
* Several Cities to LIGHT-Up PURPLE for Vitiligo Awareness
2021:
On June 1, 2021 in celebration of Vitiligo Awareness Month, Vitfriends released the following NEW information...
- We welcome MARK BRAXTON our N. C. Co-Leader to the positions of Podcast Engineer and Podcast Lead Host
- We welcome TIFFANY GRANT as a Board Member and Podcast Co-Host
- Tiffany Grant will also lead our Women's Workshop - https://www.vitfriends.org/women-s-workshop
- Boston group WELCOME our New Medical Advisor - Dr Nicole Gunasekera
- We welcome TIFFANY GRANT as a Board Member and Podcast Co-Host
- Tiffany Grant will also lead our Women's Workshop - https://www.vitfriends.org/women-s-workshop
- Boston group WELCOME our New Medical Advisor - Dr Nicole Gunasekera
- We WELCOME the return of our first 2010 - Medical Advisor - Dr Vaneeta Sheth
- VITFriends is recognized with the Communicator Award of Distinction for our Podcast which is 11yrs old
- Top rated Podcast with 182 listeners, in less than 30 days, is with special guest Akenna Kublal, a former flight attendant from the island nation of Trinidad - https://www.blogtalkradio.com/vitfriends/2021/05/24/akennas-vitiligo-journey
- Happy to announce that MyVitiigoTeam is the sponsor of our podcast
- VITFriends is recognized with the Communicator Award of Distinction for our Podcast which is 11yrs old
- Top rated Podcast with 182 listeners, in less than 30 days, is with special guest Akenna Kublal, a former flight attendant from the island nation of Trinidad - https://www.blogtalkradio.com/vitfriends/2021/05/24/akennas-vitiligo-journey
- Happy to announce that MyVitiigoTeam is the sponsor of our podcast
VITILIGO Documentary
It was 2017 that our VITFriends President/CEO Valarie Molyneaux, who was attending a film release in Cambridge, MA of "100 Years - 100 Voices." It was there Valarie approached the producer Tonia Magras about doing a story about VITILIGO. The company reached out in 2018 and 2019 but Valarie was very reluctant to follow-up for fear that the project would be an overwhelming undertaking for our organization.
Then in early March 2021, the production company reached out AGAIN and Valarie agreed to talk openly and honestly. SPECIAL Thank You to Hull Bay Productions for granting us this amazing opportunity. Today, we are PROUD to announce that VITFriends is in the filming process of what we know will be a powerful documentary about Vitiligo. This project is scheduled for completion and release in 2023 but in the mean time FUNDING will the KEY to our accomplishment. Please DONATE to this project via the LINK shown in the following trailer to our MOVIE "More Than Our SKIN" Click:.... Here is
Vitiligo Research Foundation UPDATES - 3/16/2021
Yan Valle, CEO VRF
Shields Up! A large study was conducted using nearly 200 thousand electronic health records data from USA, Spain and South Korea. While vitiligo wasn't mentioned specifically in the study conclusions, patients with autoimmune diseases are strongly advised to shield up to avoid COVID-19.
Triple-ply textile masks appear to cause less skin irritation than surgical grade masks, thereby reducing risk of Koebnerization and vitiligo development, - especially when masks are improperly re/used.
How safe is vaccination for someone with vitiligo? It's quite safe. Prof. John Harris explains.
Latest in Treatment for VITILIGO: (March 2021)
Ruxolitinib cream for treatment of vitiligo: a randomised, controlled, phase 2 trial. Rosmarin D, Pandya AG, Lebwohl M, Grimes P, Hamzavi I, Gottlieb AB, Butler K, Kuo F, Sun K, Ji T, Howell MD, Harris JE. Lancet. 2020 Jul 11;396(10244):110-120. doi: 10.1016/S0140-6736(20)30609-7. PMID: 32653055. https://newsinhealth.nih.gov/2021/03/patchy-skin
VITFriends is honored to be featured in a Boston Globe article, this was done by PFIZER. https://sponsored.bostonglobe.com/pfizer/dear-scientist-vitiligo/?p1=SC_Article_ReadMor
VITFriends is PROUD and HONORED that on September 19, 2021 to be featured in New Englands oldest and longest running Newspaper The Boston Globe. Thank you to team members who agreed to be apart of OUR story.
https://www.bostonglobe.com/2021/09/19/metro/disease-bleaches-color-their-skin-now-people-with-vitiligo-debate-whether-treat-or-embrace-their-condition/Our VITILIGO community has been WAITING...
Waiting for... Respect, Treatment, Funding for support groups, Attention, Insurance coverage, Funding for Research and so much more...
Waiting for... Our elected officials and for CONGRESS to take notice of our community, especially our children with Vitiligo.
HISTORY of our WAIT:
Parren James Mitchell (D) (April 29, 1922 – May 28, 2007) was the first African American elected to Congress from the State of Maryland and he had VITILIGO.
Parren Mitchell introduced H.R. 5264 on 3/20/1975 to the 94th Congress addressing VITILIGO.....This is 2021 and we are still WAITING!
https://www.govtrack.us/congress/bills/94/hr5264/summary
INCYTE may be just a few months away from the the potential FDA approval assuming its Phase III program with ruxolitinib cream is successful.
The FDA has scheduled an opportunity for our community to SHARE our journey with treatment and YOU can and should participate:
It is our TIME!
We have been WAITING!
The Times
“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.” - Charles Dickens
Even in the midst of the pandemic of the century, VITFriends is still thriving and still working to support our Vitiligo community!
Here's what NEW for 2021:
*VITFriends podcast can now be found on iHeart Radio and Spotify.
*VITFriends has just launched our Purple Patch TEENS Group for teenager between the ages of 15 - 20.
*VITFriends will offer CLASSES
if you have questions or comments, write to us at: vitfriendsorg@gmail.com
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HISTORIC Event:
Mary-dithTuitt -VITFriends Consultant; Valarie Molyneaux -VITFriends President/CEO; Paul Kasuba-Tufts Chief Medical Officer;
Barbara Hamilton-Boston VITFriends co-leader/VITFriends Corporate Treasurer
A WIN for one - Is a VICTORY for ALL!
IMPORTANT STEP FORWARD inthe fight for VITILIGO coverage!
On Wednesday, October 30th, a coalition co-led by Valarie Molyneaux (VITFriends Vitiligo Support Group CEO), Mary-dith Tuitt (VITFriends Consultant) Barbara Hamilton (VITFriends Boston Group co-leader) a patient-led team; and followed-up by Dr. John Harris (UMass Medical School Vitiligo Clinic & Research Center), Rachael Landauer, Esq and Robert Greenwald, Esq (Harvard Law) worked closely with the leadership at TUFTS Health Plan, finally experiencing VICTORY!
The team was supported by Step Up For Vitiligo from the Global Vitiligo Foundation, as well as a team of medical students and law students, who drafted a letter to support the message that vitiligo patients deserve treatment for their disease, and coverage for this treatment. CONGRATULATIONS to all involved!
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Better Business Bureau (BBB)
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National Suicide Prevention Lifeline
Hours: Available 24 hours. Languages: English, Spanish.
800-273-8255
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VIRTUAL World Vitiligo Conference 2020
With the cancellation of WVD 2020 due to a global pandemic,a Virtual Coming tgether was hosted
by MyVitiligoTeam.com and Global Vitiligo Foundation
with OVER 500 registering globally!
Here's a look: https://www.youtube.com/watch?v=L4iDeLzzvzU&feature=youtu.be&fbclid=IwAR2pKsf-fsBgz1JmC1-j92bcx7YKF1r6KgSGOLxwTKQx0-2QTDpVzQMDwrE
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In honor of June 25, 2020 WORLD Vitiligo Day and with the cancellation of our events in Minnesota,
we pause to reflect on 2019 in Houston, TX
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Special THANK YOU to my Kindergarten class 2019-2020 for the end-of-year GOFUNDME for VITFriends that raised over $2,400.00.
VITFriends SCHOLARSHIPS
Established June 2020 - The Belinda Reynolds Scholarship Fund is in memory of Belinda, who served as Secretary of our VITFriends Indiana group - Fearfully and Wonderfully Made Vitiligo Community with our Leader Mrs Denise Crooms-Blanks. This will offer TWO registration scholarships to anyone from Indiana attending our annual Conference for the very first time.
Established Septemebr 2021 - The Frances Bourne Scholarship Fund is in memory of Mother Frances, the mother of our Vice President Patricia Rossy. Frances attended our inaugural conference in 2009 and publicly made a commitment to support this organization and have attended many of our conference. This will offer TWO registration scholarships to anyone from NYC attending our annual Conference for the very first time.
VITFriends is pleased to have received the 2020 Governor's proclamation, declaring
June VITILIGO Awareness Month
in the
Commonwealth of MA
Congratulations!
On Saturday, February 29, VITFriends Boston celebrated Fiatsogbe Dzuali, the very first Medical Student to work with our group upon the recommendation of Dr. Vaneeta Sheth.
Fiat joined our group in 2015 and has served us well! A graduating student at Harvard University, Fiat was the VISIONARY behind the idea of having medical students supporting our VITFriends groups in each state. I mentioned that idea to Dr. Richard Huggins of Detroit's Henry Ford Hospital and VSTRONG Vitiligo Support Group and he also liked the idea. I connected Dr Rich and Fiat and they began to work on the idea together.
Today most VITFriends groups and also VSTRONG group have medical students working and learning from the Vitiligo community.
Thank you Fiat for your sacrifice and your willingness to serve our community!
NEW Book Drive
Getting books into early elementary is an on-going project of VITFriends. Educating young children about Vitiligo will help to curb the bullying that many are experiencing.
With your donations, we are preparing to send books to schools where we have children with Vitiligo. The books can be read by you or a member of our community to the child's class. If your child has Vitiligo and you desire a school BOOK PACKAGE...
Write to us @ - support@vitfriends.org
(1) Tell us the name and address of the school
(2) Teacher, Child and Principals NAME (for our records ONLY)
(3) Child's grade and AGE
(4) Your address if you'd prefer the books be mailed to you.
This drive will of course be based on our supply and your donations.
Thanks for your inquiry and generosity!
https://www.vitfriends.org/donate.htm
On Saturday, February 29, VITFriends Boston celebrated Fiatsogbe Dzuali, the very first Medical Student to work with our group upon the recommendation of Dr. Vaneeta Sheth.
Fiat joined our group in 2015 and has served us well! A graduating student at Harvard University, Fiat was the VISIONARY behind the idea of having medical students supporting our VITFriends groups in each state. I mentioned that idea to Dr. Richard Huggins of Detroit's Henry Ford Hospital and VSTRONG Vitiligo Support Group and he also liked the idea. I connected Dr Rich and Fiat and they began to work on the idea together.
Today most VITFriends groups and also VSTRONG group have medical students working and learning from the Vitiligo community.
Thank you Fiat for your sacrifice and your willingness to serve our community!
NEW Book Drive
Getting books into early elementary is an on-going project of VITFriends. Educating young children about Vitiligo will help to curb the bullying that many are experiencing.
With your donations, we are preparing to send books to schools where we have children with Vitiligo. The books can be read by you or a member of our community to the child's class. If your child has Vitiligo and you desire a school BOOK PACKAGE...
Write to us @ - support@vitfriends.org
(1) Tell us the name and address of the school
(2) Teacher, Child and Principals NAME (for our records ONLY)
(3) Child's grade and AGE
(4) Your address if you'd prefer the books be mailed to you.
This drive will of course be based on our supply and your donations.
Thanks for your inquiry and generosity!
https://www.vitfriends.org/donate.htm
Winnie Harlow Will Make History in Sports Illustrated’s 2019 Swimsuit Issue
Check out this article from Allure.
Check out the latest NATIONAL commercials
featuring vitiligo members!
featuring vitiligo members!
2019 Conference NEWS...
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Special THANK YOU to everyone who made a DONATION
to us in 2018 using
FACEBOOK Birthday system.
We APPRECIATE you and ask for your continual support of our
Awareness and Advocacy work.
We wish for you MANY more Birthdays.
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Congratulations to LIVING DAPPLED
https://www.facebook.com/livingdappled/
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Erika and Tiffany share a successful
"Let's Chat" - Season #1
Living Dappled is a Lifestyle BLOG for girls..by girls..with Vitiligo
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Our Community was represented at the 2018 Vitiligo Symposium in Detroit, MI
BACK to SCHOOL
As your children prepare to return to school
WHAT SHOULD YOU KNOW?
https://www.facebook.com/livingdappled/videos/2184174281859054/
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VITFriends Boston participated in the 2018 Dorchester Cultural Day/Fair
on Saturday, August 18, 2018
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Our Boston Group extends WELCOME
to
Our Lead Medical Advisor: Kristina Liu, MD
https://www.brighamandwomens.org/dermatology/services/vitiligo-clinic
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Our Board Member - & - Legislative Lead
Rev. Dr. Wallace Henry, III
Our
Washington, D.C. VITFriends Group Leader
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VITFriends is extremely excited for the opportunity to participate in the Conference of The French Association of Vitiligo this week in Paris, France.
We are honored to have our Vice President, Mrs Patricia Rossy, be a speaker at this Paris Vitiligo Conference.
VITFriends is extremely excited for the opportunity
to participate in the Conference of The French
Association of Vitiligo in Paris, France.
We are honored to have our Vice President, Mrs
Patricia Rossy, be a speaker at this Paris Vitiligo
Conference on April 2, 2018.
Thank you Patricia and CONGRATULATION!
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ALPHA EPSILON DELTA
Presents
Step Up for Vitiligo GALA
April 28 - Austin, TX
RSVP HERE NOW:
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VITFriends (Vitiligo Friends) welcome TWO New Groups:
Hampton, VA
and
Green Bay, WI
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Introducing our NEWEST Project.....
our own Tee-Shirt store:
https://www.spreadshirt.com/user/VITFriends#?affiliateId=8054&orgn=MPS&netw=FB
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CONGRATULATIONS
to our
Minnesota VITFriends Family
who have made connections with both
Mayo Clinic and Clarus Dermatology
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Make plans to be with us!
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VITFriends is pleased to WELCOME our new relationship with Dr. David Rosmarin of Tufts New England Medical Center, Boston, MA.
We are further please to report that our Medical Advisor Dr. Vaneeta Sheth is collabotating with him and others on a NEW Study of Topical Ruxolitinib to be used for facial vitiligo. They are reporting dramatic improvement with the use of this medication.
Here's a look at this document in Healio Medical NEWS:
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VITFriends WELCOME....Association Française du Vitiligo...French
Vitiligo Association.
We WELCOME President - Jean-Marie Meurant, Paris, France. Bonjour!
Learn more about them at:
https://www.facebook.com/assovitiligo
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Our Medical Students....
VITFriends is pleased with the work of our Medical Students and they are:
Fiat - 2015 - Harvard University, Cambridge, MA
Renata - 2017 - University of Mass, Worcester, MA
Kristin - 2019 - Tufts University
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Join VITFriends LIVE on Radio and Facebook
on Friday, April14, 2017 @ 2pm
https://www.facebook.com/groups/59746217290/
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With PRIDE we share.....
Congratulations to:
Vitiligo Research Foundation and Yan Valle, CEO and the efforts of many others, including over 500,000 signatures that was submitted, World VITILIGO Day NOW appears on the UN Calendar of Global Events! https://www.un.org/development/desa/disabilities/calendar.html
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Congratulations to:
Dr John Harris - VITFriends Member.
Here is his VITILIGO report from Rome, Italy
http://www.umassmed.edu/vitiligo/blog/blog-posts1/2016/12/vitiligo-international-symposium-rome/
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Vitiligo Research Foundation REPORT:
- VRF supports the work of VITFriends and we are Grateful!
VRF has become a consultative member of the United Nation ECOSOC
- U.S. Congress is re-considering the National Vitiligo Control Act ? a bill from 1977 that never made it through Congress but amongst its stated purposes called for ?the attainment of better methods of control, diagnosis and treatment? for vitiligo.
- Congress undoubtedly took note of the massive rally at the Capitol Hill on June 25th, part of another record-beating World Vitiligo Day that saw huge crowds attend events across the world.
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smile.amazon.com/ch/80-0618761
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American Academy of Dermatology Boston Meeting - 7/30/16
Our President Valarie Molyneaux states..."It was an honor and privilege for me to be in the company of some of the country's top dermatologist with the opportunity to share my story and share the work of VITFriends and the importance and NEED of support groups."
On behalf of VITFriends, Valarie presented Dr Pearl Grimes and Dr Seemal R. Desai with their World Vitiligo Tee Shirts. She took the opportunity to express sadness that Dr Desai at the last minute had to cancel joining us in D.C. and she thanked Dr Grimes for her recorded congratulatory message that was played during our World Vitiligo Banquet.
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National Institute of Health Clinical Trials
Search for Clinical Trials in Vitiligo:
https://clinicaltrials.gov/ct2/results?term=vitiligo&Search=Search
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World Vitiligo Day June 25, 2016
We report SUCCESS of our 1st Annual coming together as a community. Report we have received put it at over 300 people on RALLY Day. Here's just a quick look with so much more to come.
This link (folder) gives you a view of what transpired on WVD2016:
https://drive.google.com/drive/folders/0B6t-jlwJ1uXYMjBvZ0dLNnVvQzg
Please visit our facebook page for more as well...
https://www.facebook.com/groups/59746217290/?ref=bookmarks
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2016 QUOTE: "Look how far we've come" - Alicia Roufs, MN Leader
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Our 2017 World Vitiligo Weekend and WVD Celebration
was made possible by the financial contributions of the following:
Vitiligo Working Group
VWG is a physician-led organization that is supportive of the Vitiligo Community and their main goal to improve the lives of people with Vitiligo.
A special THANK YOU to WVG for being the major DONOR of our 2016 World Vitiligo Weekend helping to make this event possible.
To learn more about this very important organization and what they are doing for our community VISIT their website and facebook pages for details.
http://www.vitiligoworkinggroup.com/#!about-us-and-history/c10fk
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Vitiligo Research Foundation UPDATES:
Special Thank you to Van Yalle, CEO of VRF, who ia a supporter of the work of VITFriends over the past few years. Yan attended our Vitiligo Weekend in D.C. and spoke at our World Vitiligo Day Rally on the Capitol Steps.
A special THANK YOU to VRF for being the DONOR of our 2016 World Vitiligo Weekend, helping to make this event possible.
Here is a report about the application for membership to the United Nation,
http://vrfoundation.org/patients--2/in-the-media/news-archive/vr-foundation-at-the-un-ecosoc
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Recouler
VITFriends wishes to extend a very special THANK YOU to RECOULER and its founder Audrey VanStockhum for being the DONOR of our 2016 World Vitiligo Weekend, helping to make this event possible.
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Glogal Vitiligo Support Community
Our VITFriends president, Valarie Molyneaux serves on the planning board of the Global Vitiligo Support Community (GVSC), a sub-group of Global Vitiligo Foundation (GVF), This is a group whose aim it is to bring together ALL Vitiligo Support Groups local and international for information sharing and collaboration on all issues relating to finding a cure for and coping with Vitiligo. This group is chaired by our long-time friend and VITFriends supporter Dr. Richard Huggins of Detroit, MI
http://www.vitiligoworkinggroup.com/#!global-vitiligo-support-community/ja52o
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VITFriends involvement:
Global Vitiligo Support Community
http://www.vitiligoworkinggroup.com/#!global-vitiligo-support-community/ja52o
Vitiligo Working Group Membership
http://www.vitiligoworkinggroup.com/
Vitiligo Research Foundation Partnership
http://vrfoundation.org/maps/3
NIAMS Coalition Membership
http://www.niams.nih.gov/About_Us/Mission_and_Purpose/outside_org.asp
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A look back at 2015
- Regular Meetings in various states across the USA
- World Vitiligo Day Celebrations - Globally
- NC WVD Photo Op with Governor Pat McCrory and Sheriff Donnie Harrison
http://www.vitfriends.org/northsouthcarolina.htm
- Boston World Vitiligo Day - State House Celebration
http://www.vitfriends.org/apps/photos/photo?photoid=198953927
- Boston 2015 Conference “My Strength - Mind, Body and Soul”
http://www.vitfriends.org/apps/photos/photo?photoid=199306173
- MA State House Visit Follow-up visit with Senator Linda Forry
http://www.vitfriends.org/apps/photos/photo?photoid=199232018
- MA Commission on the Status of Women
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V-Strong NEWS....
Journaling is good therapy!
Here's what the first V-Strong/Detroit, MI meeting of 2016 had to say about that subject:
https://www.facebook.com/leethomasfox2/videos/532283096948639/
See our Life Coaching Service if interested.
Talk can be Therapy!
Consider our LIFE COACH....
See our President/Founder page
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Coaching - TALK Therapy
Let’s TALK: So that we can HELP answer your questions, as we establish a new coaching relationship.
Let’s TALK: About frequency of calls and fees.
Let’s TALK: About establishing clear goals.
Call NOW - 1-844-374-3639
VITFriends on Twitter:
QUESTION:
Vitiligo Research Foudation, the worlds leading vitiligo organization and our leading organization is needing your help with your answer to their current question:
WHAT IS ONE THING YOU WISH OTHERS COULD UNDERSTAND ABOUT LIVING WITH VITILIGO?
https://www.facebook.com/VRFoundation
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CURRENT NEWS Update: Our Medical Advisors Report:
Rheumatoid arthritis drug appears promising
Treating VITILIGO patients with Rheumatoid Arthritis drug appears promising
A case studied published in JAMA Dermatology has found that treatment with oral tofacitinib citrate (Xeljanz) — an FDA-approved treatment for rheumatoid arthritis — demonstrated partial repigmentation in a vitiligo patient. Tofacitinib is a JAK 1/3 inhibitor, which is one of the signaling components for the vitiligo pathway. Vitiligo is just one of several skin conditions that have limited treatment options. However, dermatologists are working diligently to come up with new therapies. Read more about new treatment options for vitiligo in the July 2014 issue of Dermatology World. Also, stay tuned for an in-depth look at conditions that are ripe for the development of biologic treatments in Dermatology World’s September special focus issue on biologics.
CMS posts physician-industry financial transactions for 2014
In an effort to increase transparency in health care, CMS has published information about the 11.4 million financial transactions — totaling $6.49 billion — that were attributed to more than 600,000 physicians in 2014 on its Open Payments site. The Open Payments website is a database created by the Sunshine Act that highlights the financial relationships between health care providers and the pharmaceutical and medical device industries. CMS has pledged to release the data on an annual basis. As the push for transparency in health care continues, physicians are finding that their payment information is regularly available for public viewing. Read more about physician payment transparency, how dermatologists can handle the increased scrutiny, and how they can use it to benchmark themselves in the May issue of Dermatology World.
Supreme Court upholds federal health insurance exchange subsidies
The Supreme Court has ruled 6-3 that the federal subsidies provided to millions of Americans to purchase coverage under the Affordable Care Act’s (ACA) insurance exchanges are legal. About 6.4 million individuals receive federal subsidies for enrollment in the 34 federally run exchanges. Since the implementation of the insurance exchanges, dermatologists have experienced both positive and negative sides of the system — from increased patient access to insurance to narrowed provider networks. Read more about how the ACA is affecting dermatology in the June 2014 issue of Dermatology World. Stay tuned for Dermatology World’s August issue that will cover how to purchase insurance for your employees through the ACA’s Small Business Health Options Program (SHOP) marketplace. Also, don’t miss the October issue that will discuss how to help your patients understand the exchanges and obtain coverage that includes your care.
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World VITILIGO DAY
World VITILIGO Day was a success and here is one report.
http://www.umassmed.edu/vitiligo/blog/blog-posts1/2015/06/world-vitiligo-day-2015
April 20 a few states, with the governments approval, recognized this date as the unofficial POT SMOKER Day. Yet, approval for a VITILIGO Day is STILL a struggle. Please, let your VOICE be heard, speak to your local State Rep and write your Representation in congress and tell them that we DEMAND their support for June 25 for a World Vitiligo Day. Many of these Representative do not have any idea of what Vitiligo is, so AWARENESS is key.
There are some people who simply do NOT believe me that a Pot Smoker day exist, so here is the info..
http://m.huffpost.com/us/entry/187905
The thought of this brings tears to my eyes because we WANT our own DAY as well. The GUN/Riffle Association people, the gay/lesbian/trans-gender and the POT community have a strong voice, so they get things done. Please let us come together, support this effort and get attention, hence get the government to listen to us.
One desire of our VITFriends organization is to HIRE a lobbyist to help us with the details...but we need you. We need your financial HELP. Our last inquiry revealed a lobbyist FEE that we cannot accomodate at this time in our growth. It's been frustrating and sad, but we know that it is our time, so we will continue to work hard! Your gift is TAX DEDUCTIBLE. Thank you! http://www.vitfriends.org/donate.htm?hc_location=ufi
The pot smokers and others are standing STRONG together...Let's STAND together, let's do this!
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Vitiligo PETITION
The Vitiligo Community NEEDS your support, 500,000 signatures are required by the UN. Please review and sign this petition.... (click below)
What exactly is Vitiligo all about:
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#1 of 2........QUESTION of the Month:
QUESTION: How important are Vitiligo Support Groups, especially to a newly diagnosed patient?
RESPONSE: John E. Harris, MD, PhD - Assistant Professor
364 Plantation St, Worcester MA 01605
Office: 508-856-1982 Fax: 508-856-5463 Clinic appointment: 508-334-5979 http://www.umassmed.edu/vitiligo
I would say that relationships are key to leading a healthy life, and particularly when dealing with a disease diagnosis like vitiligo! We as physicians have only brief interactions with patients, where we seek to educate them on the disease, counsel them about how it will affect their lives, and offer treatment advice. However, patients need much more than that, including interactions with others who can offer encouragement and emotional support, whether it be from family members, friends, or others who also have vitiligo.
Support groups offer an opportunity for vitiligo patients to develop these relationships with others who understand what they are going through, as well as advice and additional information about the disease from experience dealing with it. In addition to offering a safe environment for the development of these relationships, support groups can help raise awareness of the disease among the public, lobby insurance companies to recognize the disease and cover its treatments, and raise support for research. They are a critical component to making progress in all of these ways!
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#2 of 2.......QUESTION of the Month:
QUESTION: How important are Vitiligo Support Groups, especially to a newly diagnosed patient?
RESPONSE: Dr. Vaneeta M. Sheth, MD; 221 Longwood Ave, Boston, MA 617-732-4918
Dr. Vaneeta says: "I would echo Dr.John's sentiments".....
Being newly diagnosed with vitiligo can significantly affect the way people view themselves and are viewed by other people. In addition, there is always some uncertainty about if or when the disease might spread which can cause a great deal of anxiety. Dealing with this emotionally and psychologically can be a challenge. That is why I often discuss the option of partipicating in a support group to patients who are newly diagnosed.
While family and friends remain a source of strength for most people, a vitiligo-specific support group can be helpful in many ways including:
1. to provide a safe forum to discuss one's thoughts and feelings about having vitiligo
2. to serve as a resource for meeting other people with vitiligo to share and learn from each other's experience
3. to have a commmunity of people to turn to during tougher times to provide emotional support
4. to help advocate for more awareness of vitiligo as a disease, better insurance coverage for treatments, and more research funding to help find a cure.
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Here's a Report from Dr. Harris
Dr. John Harris
UMass Medical Center, Worcester, MA
Dr. John is our 2015 VITFriends Conference
Main Speaker
https://www.youtube.com/watch?v=UUV73RktPjc#t=45
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Greeting from our VITFriends Family:
Are you struggling to cope with your vitiligo or anything for that matter; well, here are the words in song written by Rev. Marvin Sapp after the death of his 40something year old wife:
CHORUS:So glad I made it,I made it through
I’m so glad I made it, So glad I made it, I made it thru, I made it thru
So glad I made it, So glad I made it, I made it thru
http://www.youtube.com/watch?v=mEv6KdGmESY&feature=related
YOU...will make it!....You CAN make.........
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World VITILIGO Day 2014!
Life - and - FRIENDS
LIFE
LIFE - is too short to wake up with regrets.
So love the people who treat you right.
Forget about the one's who don't believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life,let it.
Nobody said life would be easy, they just promised it would be worth it.
Friends
Friends - are like balloons; once you let them go, you can't get them back.
So I'm gonna tie you to my heart so I never lose you.
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Visitors & New members:
Our FRIENDS visit with us from all over the world. Here are just a few of those great Cities and Countries that our FRIENDS come from. You can also read their stories in our Guestbook:
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