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Monthly Archives: April 2012

Inflammatory Breast Cancer Research Foundation

In recent years, there has been a lot of education about breast cancer.  Women have been taught how to perform self exams and guidelines on receiving mammograms.  With this education, we have seen the death rate for breast cancer decrease.  According to the American Cancer Society’s Breast Cancer Facts & Figures published in 2011, breast cancer death rates decreased 2.2% per year from 1990 to 2007.  The percentage decline was larger among younger women where death rates decreased by 3.2% per year among women younger than 50.   The decline in breast cancer mortality has been attributed to both improvements in breast cancer treatment and early detection.  However, not all forms of breast cancer can be detected with traditional self exams or mammograms.  Inflammatory breast cancer tends to grow in nests or sheets, rather than a solid tumor.

In December 1996, an e-mail list was created to provide emotional support and education for inflammatory breast cancer (IBC) patients, their friends, and families.  A couple years later, Owen Johnson created the Inflammatory Breast Cancer Research Foundation along with others from IBC support list to focus on facilitating research of IBC.  Owen lost his wife to IBC and was moved to do more since little was being done at that time and he felt there was a need to be a voice for action.

The Inflammatory Breast Cancer Research Foundation is dedicated to facilitating research to improve diagnosis, treatment, and survival of inflammatory breast cancer while also raising awareness of the disease in the lay and medical communities.  The foundation is an independent from any specific medical facility or academic organization, so they can truly act as advocates for those who contact them.

In 2005, the foundation began an inflammatory breast cancer bio-repository to aid researchers in the study of IBC.  The Inflammatory Breast Cancer Research Foundation BioBank is one of just a handful of advocacy owned and operated tissue banks in the country.

In addition to the BioBank program, the foundation provides information via their website and monthly e-newsletter.  In addition, there is a toll-free number and website contact form to allow individuals to access a trained volunteer with questions.  An email discussion list allows individuals to share information, education, and support to those in the IBC community.  In addition, they worked with the National Comprehensive Cancer Network (NCCN) to develop a specific treatment guideline for inflammatory breast cancer and update the Breast Cancer Screening Guidelines to include detailed and thorough steps to rule out inflammatory breast cancer in patients presenting with skin changes.  These were both much needed materials to improve the diagnosis and treatment of patients.

How can you help?

  • One important way that anyone can help is to spread the word about IBC.  Some simple ways to do this are to share this post on Twitter or Facebook.  You can also print an informational brochure from the IBC Research Foundation’s website to share.
  • Donations to the foundation are also accepted via their website.  You can also run a fundraiser to benefit the foundation.
  • In addition, individuals affected by IBC can be an advocate in their community by sharing their story in the media or with groups. There are opportunities for individuals to represent the organization at various functions. You can contact them via their website if you want to learn more about volunteering.

To learn more about the Inflammatory Breast Cancer Research Foundation, please visit their website, www.ibcresearch.org.  You can also connect with them on Facebook, e-mail, their Cause page, or phone (877-786-7422).  In addition, the original online IBC support group still exists at www.ibcsupport.org.

 
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Posted by on April 25, 2012 in Nonprofit Organization

 

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Kindness in Business

Today’s post is a guest post in my kindness series.  Previous posts have included Habits of Kindness, Random Acts of Kindness, and Storytellers for Good and most recently a post about being kind to those who are different from you.  Today we learn why kindness in business is important. 

Kindness in Business LaunchHER

Do you mix business with pleasure kindness? If not, you should consider it. Working with business owners on a daily basis, I know two things: owning your own business can be very STRESSFUL and owning your own company can make business a very personal subject. The stress that comes with starting and owning your own business can be overwhelming; you wear every hat within the company. Owning your own business can also make business very personal. Afterall, it’s your livelihood, your dedication, and your income on the line. At LaunchHER, we try to keep all of this in mind and promote kindness with our clients and community. However, we don’t stop there, we also encourage our entire network to do the same.

Instant {and online} Kindness

With so much business happening online – email, Facebook, LinkedIn, etc. – these days, it’s more important {and easier} than ever to infuse kindness into business. It’s the small things like salutations in emails, a Facebook post or a Re-Tweet. You can make someone’s day and it only takes a minute. Literally.

Unfortunately, it’s also easier than ever for bad behavior to prevail. Although we don’t like to admit it, we all know it’s much easier to dish out an insensitive thought, comment, or even rant via email or Facebook {aka hiding behind the screen} than in person. With access to thousands just a mouse click away, I would always encourage you to think twice before you hit send. Yes, you may have a right to be upset, but also consider how your words or actions may make you look and impact your reputation. Not everything has to be solved immediately, take a few hours to think about an issue or discuss it with a mentor/colleague before you respond.

Can businesses have good Karma?

Giving back is an important aspect of business. At LaunchHER, we give back by promoting three women-owned businesses a week in a feature called “Freshly Launched Friday”. For many women entrepreneurs just starting out, they are looking for positive exposure and a supportive community. We are proud to offer both. The result is not only the pride of the business being launched, but also all of the other women that are paying it forward by sharing, commenting, “liking”, and just reading. Positively is definitely contagious! This is not your typical “giving back” – of course, you can support charitable organizations as a business and even host a fundraising event. Businesses can team up to make an even greater impact. There are many ways to pay it forward; get creative!

It’s easy to get caught up in all of the “busyness” of business, and overlook the importance of kindness. Just like we schedule meetings with clients and colleagues, schedule time in the day or week to infuse some kindness. Be intentional. Be kind.

Tracy helps other women build their brands through creative marketing and communications at LaunchHER, a Minneapolis based company. Tracy has always preferred the unique style of small, local and indie brands. She knows first-hand the importance of branding and marketing a small business as inexpensively and uniquely as possible

 
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Posted by on April 23, 2012 in Guest Post

 

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Cards for Hospitalized Kids

I haven’t met anyone that enjoys a stay in the hospital.  I have written about several organizations that do something to make a difference for kids that have to spend time in the hospital.  Sweet Dreams for Kids gives new pajamas to kids in the hospital; Camp Get-A-Well-A runs a hospital summer camp; and Tatum’s Bags of Fun gives bags of toys and games to kids battling cancer.  Today’s organization is also making a difference to kids in the hospital.

When Jen Rubino was 11 years old, she began suffering from a poorly understood connective tissue disorder which plagued her life with surgeries, doctor visits, and pain.  She has undergone fifteen surgeries, countless hospital stays, and has learned what it is like to struggle with illness.  She became determined to do something positive with her life.  That positive thing is founding an organization named Cards for Hospitalized Kids to make a difference to kids in the hospital.

The mission of Cards for Hospitalized Kids is to give kids hope, joy, and magic through cards.  Doctors provide the medicine to ease physical pain, but they don’t have tools to help ease the emotional pain kids feel when they are hospitalized.

The one year old organization is based in Chicago, Illinois, but they distribute cards to hospitals all over the United States.  People from all over the country and from all walks of life, including celebrities and athletes, create beautiful handmade cards to send to Cards for Hospitalized Kids.  The organization then reviews the cards to ensure they are appropriate before distributing them to hospitals across the United States.

The organization makes sure that the cards don’t include “Get Well” sayings or comments regarding the child’s medical condition because these children are much more than their medical condition.  These cards are meant to ease the loneliness and sadness that kids typically feel during their hospital say rather than remind them of their illness.

Over 6,000 kids at more than 60 hospitals have already received cards from Cards for Hospitalized Kids since their founding in March of 2010.  They have set a goal to more than double that by sending cards to 20,000 kids in 2012.

How can you help?

Getting involved with Cards for Hospitalized Kids is easy.  Anyone can make cards or host a card making event.  Visit their website for details on making cards.   Their website also has information on hosting a card making event and requesting founder Jen Rubino to visit your event via Skype.  You can also refer a child to receive a card.

This is such a simple way to impact the lives of kids who are facing unimaginable challenges.  I challenge each of my readers to send at least one card to Cards for Hospitalized Kids and tell us about it in the comments.

You can learn more about Cards for hospitalized Kids on their website, cardsforhospitalizedkids.com. You can also following them on Facebook or Twitter.

 
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Posted by on April 18, 2012 in Nonprofit Organization

 

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Open Arms MN

There are many organizations that help get food to people – such as Store to Door and Meals on Wheels.  Today’s organization is focusing their efforts on delivering nutritious meals to those suffering from chronic and life threatening illnesses.

A single act of kindness planted the seed for the organization that became Open Arms of Minnesota.  In 1986, Bill Rowe cooked a meal in his apartment and delivered it to a friend with HIV/AIDS.  His kindness evolved as he cooked for more people and the cooking moved from Bill’s apartment into a church basement, then another building in Minneapolis, and finally to their new facility in 2010.  About 6 years ago, they also expanded to include people impacted by other diseases including multiple sclerosis (MS), cancer, and amyotrophic lateral sclerosis (ALS).  

Open Arms of Minnesota is the only non-profit in the state that cooks and delivers free meals for people with illnesses such as HIV/AIDS, ALS, cancer, and MS as well as their caregivers and dependent children.  About 700 meals are cooked, packed and delivered each week by about 1900 volunteers.  In 2011, Open Arms prepared and delivered more than 420,000 meals.  Each week, their clients receive five days worth of meals, including breakfast, lunch, dinner and snacks. Their belief is that eating delicious, nutritious meals helps make the medicines and treatments more effective, so individuals are able to lead healthier, more independent lives.  Susan Pagani, Communications Director at Open Arms of Minnesota, reminded me how much an illness can take over a person’s life.  “Simple things like grocery shopping and cooking become a burden.”  Open Arms helps their clients improve their quality of life by removing that burden.

A chef and dietitian work together to create a variety of menus that are delicious and meet the needs of our clients’ diseases.  The food is cooked on site and includes local, organic ingredients wherever possible.  They recently planted a two-acre, organic garden that produces more than 20,000 pounds of organic produce.

In 2010, the organization relocated to a new larger facility and also expanded their programs.  Open Arms partners with nine Meals on Wheels programs in Minneapolis to cook meals for senior citizens in the community.  These meals are then delivered by Meals on Wheels volunteers.  During the summer months, Open Arms partners with other local organizations to offer free lunches and healthy snacks to neighborhood school age children.  They also have a program where neighborhood kids plant and harvest vegetables from the Open Arms garden and use them while cooking meals for Open Arms clients.  This allows them to learn about growing and cooking healthy meals while they make a difference to others in their community.

How can you help?

Volunteer are an integral part of the work that Open Arms does.  They have opportunities to cook, bake, deliver, plant and harvest food.  The first step toward any volunteer experience with Open Arms is to sign up for a volunteer orientation session; you can find a list of upcoming orientation sessions here.

Open Arms also has a variety of opportunities for monetary donations directly on their website.  In addition, there are some in-kind donation opportunities, such as Ensure drinks, cereal, grocery bags, coffee, office supplies, and gardening supplies.  You can visit their website for a full wish list.

You can learn more about Open Arms of Minnesota on their website, openarmsmn.org.  You can also follow their blog, connect with them on Twitter, or like them on Facebook.

 
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Posted by on April 11, 2012 in Nonprofit Organization

 

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Don’t Stare, Be Kind Instead

This year I have added an additional focus on kindness to The Blogunteer.  Recent posts included Habits of Kindness, Random Acts of Kindness, and Storytellers for Good.
Today’s post is a guest post from Mindy Rhiger.  Mindy is a librarian and book reviewer.  She blogs about books and family life at Proper Noun Blog.  
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It’s okay to be curious.
That is probably the most important thing I want to tell people.  The key is how you express your curiosity.
I wear a prosthetic arm.  It isn’t something most people see everyday, and I completely understand that people–especially kids–are curious about it.  I am happy to answer questions people might have about my arm.  I just have a few tips for people (and parents) who don’t quite know what to do or say when they meet someone physically different.
General Tips:
  • Try not to stare. A second glance is completely normal, but if you want more information than you can get in a glance or two, it might be a good idea to say hello. :)
  • It’s okay to ask questions, but look for cues.  I will often smile or make eye contact if I notice someone who looks curious to let them know that I’m friendly and willing to talk.   If you don’t see “friendly cues” from someone with a physical difference, it might be a good idea not to approach them with questions.
  • Keep offers to help reasonable, and remember they probably aren’t necessary.  If someone doesn’t look like they are struggling, they probably don’t need help.
  • Ask before you touch someone’s assistive device, including wheelchairs, prosthetics, or eye glasses.
  • Don’t make assumptions about a person’s disability.  For example, most people assume I lost my arm in an accident, but that isn’t true.  Try to ask open questions rather than specific (e.g. “What happened to your arm?” is better than “How did you lose your arm?”)
  • Be discreet.  Not everyone likes to be the center of attention, especially when talking about themselves.  It might be a good idea to ask your questions privately or in a small group.
Tips for parents:
  • Talk about people with physical differences before the issue comes up.  You might share books from my bibliography or watch the episode of the PBS Kids show Maya & Miguel where they meet their friend Andy, who has one arm like me.
  • Allow kids to ask questions directly of the person with the disability if possible.  Look for signals to see if they seem willing to be approached.
  • If your child does ask a question about someone’s disability, let the person answer.  I find that most people with disabilities understand kids’ curiosity and are quite willing to show them that they are not as different as they might appear.
  • You might make a connection to something your kids know when you talk about physical differences.  I often compare myself to Nemo, who had a “lucky fin.”
  • Don’t be too hard on kids if they do or say something rude.  For most kids–and some adults–it’s a new experience to meet someone with a particular physical difference.
  • Be prepared for repetition.  Younger children (preschoolers, in particular) are likely to ask the same questions about my arm the first several times we meet.  It might feel a bit embarrassing to have them bring it up over and over again, but it’s normal, and it will sink in eventually.
I completely understand curiosity about me–about how my arm works or how I do things one-handed–and I’ll gladly answer questions rather than leave people wondering.  Next time you happen to meet someone who is different, approach them with kindness, and you just might find that they will answer all your questions.
If you are curious about Mindy’s prosthetic arm, check out her Fake Arm 101 page for answers to frequently asked questions.
 
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Posted by on April 9, 2012 in Guest Post

 

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