Our next world-wide Vitiligo web meet-up is scheduled for Sunday, August 9th, at 8a Pacific / 11am Eastern / 2pm GMT. The international time link is here: http://www.timeanddate.com/worldclock/fixedtime.html?month=8&day=9&year=2009&hour=9&min=0&sec=0&p1=137. To connect to the actual session Sunday, use this link: http://www.tinyurl.com/vitiligo. Enter your own name in the box that appears, and then run the file that downloads if it doesn't do so automatically. (If you are in the US and have any trouble making the computer connection, you can call in by telephone instead at 877-880-7307, pin 495124.)
Our focus will be on Vitiligo "awareness" issues and the efforts being made to promote understanding of Vitiligo in our larger communities. Our guest will be Maria Balarin, and her bio is below. We'll brainstorm with Maria the things that we can do to increase awareness of Vitiligo, and then socialize like we have done before!
Hope you can attend!
Maria Balarin's Bio:
Currently I am a real estate broker in New Jersey and in this field of work for the last nine years. I started my own real estate firm in 2004 then merged the business in 2008.
In July of 2007 my oldest son, Alexander was diagnosed with Vitiligo followed by my youngest son's diagnosis of Vitiligo in September of 2007.
The first month after Alexander's diagnosis I spent researching. I learned that the National Vitiligo Foundation was hosting a meet & greet at NYU School of Medicine in August of 2007. I attended. I immediately became a member and attended the National Vitiligo Conference in Ohio on October of 2007. I raised funds for NVF and made the contribution at the 2007 conference. Upon my return, I decided to petition New Jersey Governor Corzine for a proclamation, Vitiligo Awareness Month. I believe with awareness comes acceptance of this disease. March 2008 the proclamation was approved designating the month of April, Vitiligo Awareness Month. I organized an educational forum at Wayne Hills HS. About 350 freshman's attended. A meet and greet was also organized for Vitiligo patients and there family. Fortunately, out of the April meet and greet a teenage Vitiligo patient, by the name of Dhanya...became inspired to raise money for the NVF and organized a Indian Classical Dance, where she performed and raised money for the foundation. During that same April weekend 2008, I held the first walk for Vitiligo Awareness across the Brooklyn Bridge in NYC.
I am passionate about awareness as it is the key to successfully putting this disease on the map and therefore fundraising activities for scientific research can spawn all over the country.
You need to be a member of Vitiligo Friends to add comments!
hello Maria,
Great work, I missed todays meet and really sad as I was thrilled when I got to know that the focus for the on August meet is on Awareness. It is exactly what am doing in Nigeria and West Africa as well as Supporting persons living with Vitiligo to live positively, it would've been nice hearing from you directly, all the same am happy that I did hold and I hope to talk more with you. www.vitsaf.org
New Jersey - April
Delaware - July
Florida - April
Other states? Proclamation + events? (sell wristbands/tshirts)
Focus on April?
National? Build up to this.
Get involved in walk-a-thons and learn from this.
High school educational forum (produce material for? ppt? NVF produce?). We could each do on our local level. Encourage clubs (share success stories in the network). Start school education as a discussion thread and/or group.
YouTube video: Dr. Boissy on "What Is Vitiligo?"
Organizational meetings - Maria lead?
* Needs contacts in different states
* Start email campaign.
* Outline the steps for state efforts, coach state volunteers
* Relate to fundraising
* YouTube video--what to do if you want to help (joing our network!) Record as part of our next Elluminate meeting on this.
National Vitiligo Society of the UK. Nov 2009 Conference
* Link
* Broadcast from the conference?
NVF Conference? Annual Meeting
* Various cities around US
Vitiligo International - www.vitiligosupport.org
Online conference? :)
New website address
New groups
Fundraising for research
Wristbands/etc.
Current hot topics
Introductions
Replies
Great work, I missed todays meet and really sad as I was thrilled when I got to know that the focus for the on August meet is on Awareness. It is exactly what am doing in Nigeria and West Africa as well as Supporting persons living with Vitiligo to live positively, it would've been nice hearing from you directly, all the same am happy that I did hold and I hope to talk more with you.
www.vitsaf.org
My notes:
New Jersey - April
Delaware - July
Florida - April
Other states? Proclamation + events? (sell wristbands/tshirts)
Focus on April?
National? Build up to this.
Get involved in walk-a-thons and learn from this.
High school educational forum (produce material for? ppt? NVF produce?). We could each do on our local level. Encourage clubs (share success stories in the network). Start school education as a discussion thread and/or group.
YouTube video: Dr. Boissy on "What Is Vitiligo?"
Organizational meetings - Maria lead?
* Needs contacts in different states
* Start email campaign.
* Outline the steps for state efforts, coach state volunteers
* Relate to fundraising
* YouTube video--what to do if you want to help (joing our network!) Record as part of our next Elluminate meeting on this.
National Vitiligo Society of the UK. Nov 2009 Conference
* Link
* Broadcast from the conference?
NVF Conference? Annual Meeting
* Various cities around US
Vitiligo International - www.vitiligosupport.org
Online conference? :)
New website address
New groups
Fundraising for research
Wristbands/etc.
Current hot topics
Introductions
http://umconnect.umn.edu/pigmentdisorders