Posts in : Charities in SL

  • Oct
    13

    The AEGs 2nd Annual Rock the Pink Event at Rez


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    by MainAdmin
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    The 2nd annual Rock the Pink event in aid of Breast Cancer awareness will be held at Rez Nightclub on the 24th October 2014 at 6pm.

    Last year this event raised over $320 REAL US Dollars!! This year they are hoping to raise even more and help the fight to find a cure.

    The event Facebook page is: https://www.facebook.com/events/589290987860957/.


    Some pictures from last years event (full album link at the bottom):

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    Flickr album from last years event: https://www.flickr.com/photos/caveycharlesworthdesign/sets/72157648713649785/

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  • Jun
    10

    CF University by The Boomer Esiason Foundation


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    by MainAdmin
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    CF University – Cystic Fibrosis University – http://maps.secondlife.com/secondlife/BOOMER%20ISLAND/17/73/28

    Cystic Fibrosis Education Presented By The Boomer Esiason Foundation

    Presented by the Boomer Esiason Foundation, this region aims to educate the general public about cystic fibrosis, provides valuable resources to sufferers, and is a fun place to relax and socialize with the CF community.

    My SL charities exploring continues with a SIM dedicated to Cystic Fibrosis. The CF University by The Boomer Eliason Foundation is a very lovely SIM. They have a beautiful board walk down the side of a river, a balloon ride tour of the SIM, educational buildings and a gift shop.

    One of my favourite spots was the ballroom which I assume they hold functions in from time to time.

    I spent a lot of time in the building explaining treatments, symptoms, diagnosis, etc in. Each of the boards has a notecard that explains the various parts of the information on Cystic Fibrosis. The gift shop has a number of items you can buy along with a lot of freebies for you. Off to the side, they also have a sandbox for you to go play in and build to your hearts content.

    Please do visit this SIM and give your support to this charity and visit their website for more information amd to donate online… As with most charities, they can always do with your financial support 🙂

    Boomer Website – http://www.esiason.org/
    Donate Online – http://esiason.org/donate.php

     

    View album on Flickr

    Boomer Website – http://www.esiason.org/
    Donate Online – http://esiason.org/donate.php

    What Is Cystic Fibrosis?

    Cystic fibrosis is a fatal genetic disorder that affects more than 30,000 Americans. Although CF is not yet curable, the situation is not hopeless. Every day since the CF gene was discovered in 1989, the pace of CF research has greatly accelerated. Today, 40 percent of the CF population is over the age of 18. And thanks to advances in medicine and technology, these adults are enjoying an improved quality of life.

    Causes

    Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics, including height, hair color and eye color. Genes, found in the nucleus of all the body’s cells, control cell function by serving as the blueprint for the production of proteins.

    Symptoms

    The severity of cystic fibrosis symptoms is different from person to person. New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations, or defects. Scientists have found more than 1,500 different mutations of the CF gene.

    Diagnosis

    How can you know for sure if you or your child has cystic fibrosis? If someone in your family has the disease, could you pass it down to your children?

    Treatments

    Staying healthy and maintaining optimal lung function requires people with cystic fibrosis to follow a regular treatment routine. The therapies for CF include airway clearance techniques, a variety of medications and good nutrition. If and when a person with CF develops severe lung disease, they may discuss the option of lung transplantation with their CF care team.

    Research

    Scientists and researchers are working every day to find a cure for cystic fibrosis and also to develop treatments that greatly improve the quality of life for CF patients. Each day since the cystic fibrosis gene was discovered in 1989, the pace of CF research has greatly accelerated, and scientists continue to find ways to help those who live with the disease.

    *All the above text about CF is by The Boomer Esiason Foundation.

    Boomer Website – http://www.esiason.org/
    Donate Online – http://esiason.org/donate.php

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  • May
    29

    dEBra of America in SL – Satellite Office


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    by MainAdmin
    posted in Charities in SL
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    Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™

    I wrote a couple of weeks ago about the debra of America office in SL – /debra-of-america/.

    They also have a small satellite office also – http://maps.secondlife.com/secondlife/Scoop%20Motors/36/34/21. Please do visit one of the 2 offices and help raise awareness for this very unknown disease.

    The SIM is also home to the “Demonic Blackhearts” and “Wayward Angels” Motorcycle Clubs. The SIM is not restricted to just these two clubs, and it has the most amazing roadway heading off up in the sky (1,000 meters long I believe)… It goes on for a loooooong time (see pictures below) and you can rez your own motorcycle (or car) and explore things…

    In addition to this, you will find “The Cellar” fashion store which is the fashion store for Cerise Emor, who is also the main SL person for the dEBra charity. Please check this out while you are there or seek out a store near you…

    But do first make a stop at the dEBra office and donate some Linden 🙂

    What is debra and EB?

    DebRA is dedicated to finding a cure for Epidermolysis Bullosa (EB) – The Worst Disease You’ve Never Heard Of.™ EB is a rare genetic skin disease causing chronic, painful blistering affecting 1 in every 20,000 live births in the US.

    The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™ Visit: www.debra.org

    Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.

    debra of America in SL satellite office – http://maps.secondlife.com/secondlife/Scoop%20Motors/36/34/21

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  • May
    21

    The American Cancer Society in SL


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    by MainAdmin
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    American Cancer Society – http://maps.secondlife.com/secondlife/American%20Cancer%20Society/128/154/22

    Home to the American Cancer Society in SL.  Monthly cancer awareness events & information, self interactive info 24/7, support groups & programs. ACS, cancer, charity, RFL, Relay For Life, survivors, fundraising, research,, Making Strides, breast cancer

    Cancer is something that is very close to so many of us these days. It is directly connected to me personally through my Mother, Father and Aunt all having had a variation of it over the years. Thankfully 2 out of 3 survived the treatment but my aunt was not so lucky.

    The American Cancer Society offers hope to sufferers of this often fatal disease, the ACS in Second Life offers education/awareness programs and aims to unite survivors and caregivers. Residents can also visit Anatomica, which examines the key player in the body’s immune system: the white blood cell.

    The ACS needs public help to continue fighting this disease and to help look after those both going through treatment, those who have survived treatment and to the families of those unlucky enough to lose that fight.

    The ACS in SL provides a very beautiful SIM where you can find out more about what the ACS does, donate to the cause and also visit a remembrance garden to those who have lost the fight. You can add to this wall by request and give yourself somewhere in SL that everybody can go to and pay their respects with flowers that will also benefit the ACS as they will receive the linden cost of the flowers.

    Do please visit this sim and donate to the charity in any way you can do. Together we can fight this and together we can win that fight eventually.

    American Cancer Society Website Donate to the ACS

    American Cancer Society Website Donate to the ACS

    View Flickr Album

     

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  • May
    16

    dEBra of America


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    by MainAdmin
    posted in Charities in SL
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    Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™

    debra of America SL Office, Party City – http://maps.secondlife.com/secondlife/Banshee/168/34/57

    I was investigating the Destinations list and came across this SIM and it got me thinking….. This is perfect way for charities to reach so many people and the Cancer fundraiser that the AEG held last year is a classic example of the good we can all help to make if we all pull together.

    So with that in mind, I thought it was very much deserving of a post on here to help raise the awareness of it and get people involved in helping to raise money for what is really an unheard of disease that does affect so very many people.

    Do jump over to their SIM and pick up a t-shirt and wristband or head over to their website and donate to the cause.

    What is debra and EB?

    DebRA is dedicated to finding a cure for Epidermolysis Bullosa (EB) – The Worst Disease You’ve Never Heard Of.™ EB is a rare genetic skin disease causing chronic, painful blistering affecting 1 in every 20,000 live births in the US.

    The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™ Visit: www.debra.org

    Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.

    The manifestations of EB, the symptoms the person suffers from, and the overall long term outcome on quality of life run the gamut from mild to devastatingly severe. This is dependent on several factors including the type and subtype of EB and the inheritance pattern (autosomal dominant versus recessive). There are many people who are diagnosed with milder forms of EB, which, while they can be extremely difficult and painful to live with, are not disfiguring or lethal. In these forms of EB blistering of the skin may be limited to the hands and feet which may not result in any scarring or loss of function. In more severe forms there is generalized blistering of the skin as well as injury to many internal organs and bodily systems. These more severe forms of EB result in disfigurement, disability and early death, usually before the age of 30. In fact, some forms of EB are lethal in the first few months of life.

    EB is caused by mutations in the DNA code that make up genes. Genes are responsible for making and expressing proteins. EB can result from one genetic mutation in any one of the 18 genes that have been found to cause the disorder. These mutations, or errors in the genetic code, may not allow the affected gene to produce a specific protein, or it may result in the incorrect formation of that protein. Either way, the mutation does not enable the affected protein to work correctly thus resulting in extremely fragile skin, and other manifestations of EB like: anemia, cardiomyopathy, syndactyly (fusion of the fingers and toes), renal insufficiency, dysphagia (difficulty swallowing), malnourishment, cancer, constipation, osteoporosis, muscular dystrophy and pyloric atresia.

    There are four types of genetically inherited EB: Simplex, Dystrophic, Junctional and Kindler. These four major types of EB differ phenotypically (what physical manifestations look like) and genotypically (the genetic makeup) as well as by the area of the skin where there is blistering, otherwise known as “the site of ultra-structural disruption or cleavage”. There is also an autoimmune form of the disorder called, EB Acquisita .

    Children with EB are known as Butterfly children because their skin is as fragile as the wings of a butterfly.

    There are about 30,000 people with EB in the United States.

    EB affects both genders and every racial and ethnic background.

    PROGRAMS & SERVICES:

    www.debra.org/programs

    • NEW FAMILY PROGRAM: Provides a comforting support system for newborns and families as they begin to care for a child with EB. Families receive practical information on wound care and issues related to the care of infants with EB, medical supplies, and gifts to comfort and welcome the new baby. A trained coordinator offers one-on-one support to families by phone and/or through in-person educational visits.

    • WOUND CARE CLEARING HOUSE: The WCC distributes wound care supplies to those who cannot afford them. The specialized, non-adherent bandages and other necessary supplies can have a retail cost in excess of $10,000 per month. In many cases, private insurance, Medicaid or Medicare does not cover the entire amount. The Clearinghouse aims to bridge these gaps in coverage, as well as support those without insurance. Last year, over $320,000 worth of supplies were sent directly to those in need.

    • FAMILY CRISIS FUND: provides emergency assistance to alleviate the difficulties of unreimbursed costs of medical supplies, comforting aids or procedures for EB patients.

    • EB NURSE EDUCATOR: Geri Kelly manages over 3000 inquiries annually. She answers medical questions, makes referrals, and directs EB patients to important resources. Call Geri at (866) 332-7276 or email nursegeri@debra.org

    • THE PATIENT CARE CONFERENCE: held every 2-years to connect EB families with the best and brightest minds working on care and cure strategies for EB. Watch videos from the 2012 PCC in Orlando, FL (July 30-August 1) www.debra.org/pcc2012videos

    • DebRA of America has helped fund 30 grants in 9 countries.

    • 89.4 cents of every dollar donated to DebRA of America funds our programs, services and research for a cure.

    Company Overview
    debra of America, Inc.
    75 Broad Street, Suite 300
    New York, NY 10004

    Phone: (212) 868-1573

    DONATE: www.debra.org/donate

    LOCAL EVENTS: www.debra.org/events

    Fundraise and spread EB Awareness by creating a PERSONAL FUNDRAISING PAGE: www.debra.org/personal-fundraising

    Website: http://www.debra.org
    Website: http://www.debra.org/donate (donate)
    Twitter: https://twitter.com/debraofamerica
    Photos: http://bit.ly/DebRAofAmericaPhotos
    Pinterest: http://pinterest.com/debraofamerica
    YouTube: http://www.youtube.com/DebraofUS
    LinkedIn: http://www.linkedin.com/company/debra-of-america
    Facebook: https://www.facebook.com/DebraofAmerica

    debra of America SL Office, Party City – http://maps.secondlife.com/secondlife/Banshee/168/34/57

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