VITILIGO Friends "VITFriends"

A Vitiligo Support Community of FRIENDS

 

UPDATES.....

 Here is a $-PAID-$ opportunity that can HELP you and your child, making it financially possible to attend our 2018 World Vitiligo Conference to be held at University of Massachusetts, Worcester Campus.

 

NEW OPPORTUNITY: 
Vitiligo Patients and Caregivers of 6-17 year olds. #Vitiligo
Details: 45-min TELEPHONE INTERVIEW, $75 Honorarium

 

Qualification: To earn the honorarium, you must take a 5 min online screening survey, schedule your interview (online) and complete the Telephone Interview.

 

Seeking: Vitiligo Patients or Caregivers or Vitiligo Patients aged 6 – 17 years old


Goals: To better understand your experiences when treating and managing the condition.
Interviews are taking place October 24th, 2017 – November 3rd, 2017 or until space fills up.

 

To see if you qualify, go to http://alphadetail.com/vitpat and for the referral code that was provided use: VF1234

 

Kindly share this information with other families with children with Vitiligo.

 

 

 

 

 

 Make plans to be with us!

 

 

Thanks to our University of Massachusetts Medical Student Assistant, Renata DeCosta, VITFriends will be participating in the upcoming Brazilian Health Fair.

 

We are excited about this opportunity to spread awareness, as we share our products - share information about our group - share about our global Vitiligo Community and share about our condition.

 

 

 

 

 

 

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:

 

http://www.healio.com/dermatology/skin-care/news/online/%7Be4a6bacf-ef11-41ef-887b-e1875cef91e4%7D/topical-ruxolitinib-provides-repigmentation-in-patients-with-facial-vitiligo

 

 

 

 

 

VITFriends WELCOME....Association Française du Vitiligo...French

Vitiligo Association.

 

We WELCOME President - Jean-Marie Meurant, Paris, France.   Bonjour!

 

Learn more about them at:  

www.afvitiligo.com

 

https://www.facebook.com/assovitiligo


 
 

            Our Medical Students....

VITFriends is pleased to WELCOME to our Board of Directors, our very active and involved Medical Students and they are:

Renata - University of Mass, Worcester, MA

Fi   -  Harvard University, Cambridge, MA 

 

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Join VITFriends LIVE on Radio and Facebook

 on Friday, April14 @ 2pm

 https://www.facebook.com/groups/59746217290/

 www.redeabr.com

 

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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

 

 

Congratulations to: 

Dr John Harris  -  VITFriends Board 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 World Vitiligo Weekend and WVD Celebration

was made possible by the financial contributions of the following: 

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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.

 http://www.recouleur.com/

  

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NEW Group: Glogal Vitiligo Support Community

Our VITFriends president, Valarie Molyneaux serves on the planning board of the Global Vitiligo Support Community (GVSC) which is a group whose aim it is to bring ALL Vitiligo Support Groups together local and international for information sharing and collaboration on all issues relating to finding a cure for Vitiligo.  This group is chaired by our 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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                   Happy New Year 2016!

 

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

 

 

COACHING SERVICE:
TIMES:

 

                         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

http://www.25june.org/

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?

RESPONSEJohn 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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BLUE

VITFriends has selected BLUE as our color! 

 

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:

  • So glad I made it, I made it through
  • In spite of the storm and rain, heartache and pain
  • Still I’m declaring, That I made it through
  • See, I didn’t lose, Experience lost at a major cost
  • But I never lost faith in you. So if you see me cry,It’s just a sign that I’m, I’m still alive
  • I got some scars, but I’m still alive, In spite of calamity,He still has a plan for me, And it’s working for my good, And it’s building my testimony
    CHORUS:So glad I made it,I made it through
  • In spite of the storm and rain, heartache and pain, I’m still alive to say, I made it through I didn’t lose, Experienced lost at a major cost,But I never lost faith in you
    I’m so glad I made it, So glad I made it, I made it thru, I made it thru
  • Chorus: 5 times.....So glad I made it, So glad I made it, I made it thru, I made it thru
  • Oohh,
    So glad I made it, So glad I made it, I made it thru
  • Ooohhh, so if you see me cry, It’s just a sign that I’m, I’m still alive, I got some scars, but I’m still alive, In spite of calamity
  • He still has a plan for meIt’s working out …..

    http://www.youtube.com/watch?v=mEv6KdGmESY&feature=related

    YOU...will make it!....You CAN make.........

     

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  • World VITILIGO Day 2014!

    I hope other vitiligo groups had a chance to celebrate and to recognize World Vitiligo Day where ever they are in the world. We ask that you would consider sharing your photos with us.

    World Vitiligo Day is beginning to be recognized globally, but continues to need more voices to help the cause. This petition will go before the United Nations who has the power to approved and make this date June 25 official. June 25 was selected in recognition of Michael Jackson whose vitiligo was verified and confirmed. Write to your representative in Congress and help us get this recognized. We NEED you!

    Bringing AWARENESS of our condition is very important. Most importantly, we hope to bring attention as we encourage support for VITFriends and also for funding of which a portion will be directed to needed research that is done by institution/groups that our team has verified as reputable.

    We were pleased to have with us: Valarie, President of VITFriends; Dr Harris of UMASS Medical Center; Barbara, VITFriends Secretary/Treasurer; Jenny whose son has VIT; Andrae a MBTA train operator and Dr. Ethan of Mass General Hospital.

     

    VITFriends received a proclamation from the Boston City Council recognizing World Vitiligo Day in our City. We were introduced my Councilor Rob Consalvo, who has been a strong supporter of VITFriends for many years. We both had one minute to address the council and we certainly look forward to more wonderful opportunities like this one.

     

     

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    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:  Canada; Italy; Australia;  Sudan; Hong Kong; Nigeria; Ohio; New York City; Florida; North Carolina; Las Vegas; Connecticut; Jamaica, West Indies; Trinidad, West Indies; Tanzania, East Africa; New Delhi, Czech Republic, India;...... We look forward to hearing from you!

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