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The Cancer Survivors Club

The Cancer Survivors Club

“Cancer is a journey, but you walk the road alone. There are many places to stop along the way and get nourishment – you just have to be willing to take it.”  ~ Emily Hollenberg, cancer survivor

Each person’s journey through cancer diagnosis and treatment is unique, but there are threads that tie their stories together.  Today’s post is about a book that hopes to help share those common threads to support others going through treatment.

Chris Geiger was a healthy and athletic twenty-four year old man when he was diagnosed with Non-Hodgkin’s Lymphoma and told he only had three months to live.  Over the next two years he endured operations, radiotherapy, chemotherapy and a bone marrow transplant before he was finally in remission.  After his treatment, he started writing light-hearted columns for local and national newspapers about cancer issues.  He admits, “I am not a writer, I come from a computer software background,” but his writing has earned him awards including the 2011 “Columnist of the Year” award sponsored by EDF Energy and a Guinness World Record for the “Most Published Newspaper Article”.

Since his remission, Chris has met and spoken with many newly diagnosed cancer patients.  During one of these conversations in 2009, Chris remembered back to his diagnosis and his desire to read stories of other “normal” cancer survivors for encouragement and guidance.  He began his personal campaign to help patients and their families and “The Cancer Survivor Club” book was a result.

The book is filled with stories submitted from readers of Chris’s columns and a radio tour he did.  The stories come from men and women of a variety of ages who have survived a variety of cancers.  The main focus of the book is to help, encourage and inspire anyone touched by cancer.  In addition it provides current sufferers with a distraction from the worries of daily treatment, by encouraging them to think about life once they have become a survivor themselves.  Chris says, “I want to encourage cancer survivors to act almost like ambassadors, by using their experience to support and inspire other people who are currently receiving treatment; until they too become survivors.”

The book includes a letter named “Dear Tumour”, in which Chris writes “I now can’t do things by halves, can’t sit around doing nothing, can’t waste a moment of tis life I managed to save. You taught me how precious every day is and how fragile we all are.”  He is taking that manta to heart by not only helping those with cancer, but also working to support cancer charities.  Chris gives free talks to cancer groups and centers across the United Kingdom and donating the book profits as well.  You can find a list of these events here.  Chris hopes to publish this book bi-annually so he encourages those going through treatment to keep a journal and make a goal to submit their story.

One story was from Shelly Ostrouhoff.  In “Cancer is a Word, not a Sentence”, she writes, “I never once thought anyone else could be going through what I was experiencing.  It felt like I was the only one in the world with cancer.”

You can learn more about the Cancer Survivors Club and purchase the book at www.thecancersurvivorsclub.com.  You can connect with the book on Facebook and Twitter.  You can also follow Chris Geiger on Twitter.

Related post: The Cancer Poetry Project

 
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Posted by on December 4, 2012 in Other

 

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The Cancer Poetry Project

The Cancer Poetry Project

I come across organizations to write about in a variety of ways; random searches, suggestions, my own experiences, and happening upon them, to name a few.  Today’s post falls into that “happening upon them” category.  I actually saw someone mention the Cancer Poetry Project on a chalk board at a local coffee house and after looking into it, I decided that it would make a great story for The Blogunteer.

When Karin Miller was expecting her first child, her husband was diagnosed with cancer.  This took Karin on an emotional roller coaster and she turned to writing poetry to help sort out her feelings.  After her husband went into remission and her daughter was born, she kept writing poetry.  One morning she woke up with the idea of creating a poetry book written by a variety of people who have been touched by cancer.  She told me that “it felt like a calling.”  

The Cancer Poetry Project book was published in September 2007.  The profits from the book go toward cancer organizations.  The two of Karin’s favorite organizations that have been supported by the book are Gilda’s Club and Cancer Legal Line.  Karin is currently working on a second volume to be published in early 2013 which will include about 140 poems selected from over 1,000 submitted poems.  The top 12 poems chosen received a cash prize plus each were able select their favorite cancer organization to give a donation in his or her name. 

Every poem in both volumes is followed by a brief bio of the poet including who he or she wrote the poem about and why the situation moved them to the write the poem.  Karin mentioned, “I like to provide context for each poem.”  She also mentioned that readers often tell her how much it means to them to understand the stories behind the poems. 

One poem was written by a woman who met her current husband after her children suggested she meet their friend’s dad.  He had also just lost his spouse to cancer.  They met to talk, eventually fell in love, and now have been married many years.  One poem included in the second volume was written by a five year old boy about his mother’s breast cancer. 

Many poems included have been written by people who have never written poetry until a cancer diagnosis of their own or a loved one.  Karin states, “It’s so exciting to call someone and let them know they’re going to be a published poet.”  A few poets have gone on to get publishing contracts or be featured on Garrison Keillor’s A Writer’s Almanac. 

You can help spread the word about this collection of poems by buying a copy for yourself or in memory of a loved one.  You can also have a copy sent to a favorite clinic, hospital, physician, or nurse.  Poetry offers a great addition to the lobbies and waiting rooms of hospitals.  Reading the poems in this book helps people feel not so alone during their diagnosis, treatment, and recovery.  Readers, even those who have never read poetry, are sometimes surprised to find poems that resonate so well. 

You can learn more and purchase the current book, The Cancer Poetry Project, on their website, cancerpoetryproject.com.  You can also purchase the book on Amazon and Barnes & Noble.  You can also connect with The Cancer Poetry Project on Twitter and Facebook.

 
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Posted by on October 25, 2012 in Other

 

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Headbands of Hope

Hair is important to girls.  Before a recent haircut, my daughter told me she didn’t want hair a boy haircut.  When I was in high school, I had pretty short hair for a while.  My part time job at the time required me to wear a hat and I was called a boy more than once.  Today’s organization is helping girls who have lost their hair still feel girly and pretty.

Headbands of Hope is on a mission to spread hope in all girls, one headband at a time.  They are located in Charlotte, North Carolina and their headbands are manufactured in Bismarck, North Dakota.  The organization was founded by Jessica Ekstrom after she interned with the Make-A-Wish Foundation in 2011.  She met girls who lost their hair due to chemotherapy treatments and loved to wear girly headbands to still feel pretty and keep their feminine identity.  Wigs can be awkward and uncomfortable and hats are not that girly, so a headband is a great way to boost their spirits when they looked in the mirror.  You can read the touching wish story that inspired Jessica here

Headbands of Hope

Jessica is also an inspiration to girls because she started Headbands of Hope when she was just 20 years old.  She says, “Hopefully my story shows people that it’s never too early to follow your dreams.”  While she admits there are challenges to running an organization while also focusing on school and keeping a social life, she continues, “I wouldn’t have wanted to start it any other way.  I can say I’ve helped hundreds of girls and started a fashion trend that makes a difference, all before I get my [college] diploma.”

Headbands of Hope has a variety of headbands for girls and women on their website.  For each headband purchased, $1 is donated to the St Baldrick’s Foundation to fund life-saving childhood cancer research.  In addition, headbands are donated to hospitals for girls undergoing treatment.  They work with St. Baldricks to select hospitals or take suggestions by e-mailing Jessica@headbandsofhope.org.  You can read one volunteer’s story of bringing headbands to a hospital here

In a recent interview on the Bellaspire Blog, a young headband recipient named Tori said, “I like headbands because my head is bald! It makes me look pretty and the headbands are soft and don’t hurt my head.”  Tori’s favorite headband is the one named after her, Totally Tori.

How can you help? 

  • Purchase headbands via their website or through a retail location.
  • If you are a retailer and would like to carry Headbands of Hope, you can contact Jessica at Jessica@headbandsofhope.org.
  • You can also spread the word about their mission on social media and sharing with friends. 
  • You can also find out more about becoming a Hope representative by contacting Jessica.

Learn more about Headbands of Hope on their website, headbandsofhope.org.  You can also connect with them on Twitter and Facebook.

 
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Posted by on August 29, 2012 in Nonprofit Organization

 

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Good Wishes Scarves

For anyone who knows me in person…I am a bit of a scarf addict!  Plus, my mom is a cancer survivor, so when I found today’s organization, I quickly sent them my request for information.

Good Wishes Scarves has a simple mission.  They wish to provide one beautiful It’s a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment. Their goal is to in some small way ease their journey, provide a small bit of comfort and share the power of positive thinking and good wishes with these individuals on their path to healing and recovery.

Laurie Erickson had been a CEO of a successful fashion accessory company when she received a simple question from a customer.  Hilary, who had recently undergone chemotherapy treatment, asked what Laurie’s company had for someone who had lost her hair.  Laurie apologized and told her she did not carry anything of that nature.  This sparked an idea for Laurie.  Laurie describes what happened next, “For years I had worked with the finest cotton and silk fabrics with the most beautiful and inspiring colors and designs. I offered to send Hillary a scarf at no charge. It was the least I could do for this woman who was just looking for a little something to make her feel pretty and feminine during a difficult time. At our staff meeting later that week, we took a moment for Hillary and we sent our very first scarf along with our good wishes for a quick recovery. It was at that time that the Good Wishes program was born.”

The Good Wishes program is unique because they don’t just send a scarf or wrap, they also include a card hand signed by their employees and volunteers with thoughts, hopes and wishes for the individual receiving the scarf.  They also honor each recipient with a placard on their Wall of Hope so they can continue sending good wishes and thinking of them.  Since 2006, they have sent over 10,000 wraps and scarves around the United States.

How can you help?

  • Monetary donations can be made on the organization’s website to purchase fabrics, sew, and  ship the scarves and wraps.
  • In addition to monetary donations, they also accept donations of soft, breathable fabrics.
  • Volunteer your time and creativity at a Good Wishes fundraiser or help out at their offices in North Bend, Washington.
  • They have a Good Wishes Ambassador program where people who have a passion for Good Wishes actively promote the program and raise funds in their communities.
  • You can also contact them with other suggestions of ways you would like to help.
  • You can also spread the work about the program with anyone in need, a hospital, treatment center or support group.

You can learn more about Good Wishes Scarves on their website, www.GoodWishesScarves.org.  You can also connect with them on Facebook, Twitter or via e-mail.

 
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Posted by on May 1, 2012 in Nonprofit Organization

 

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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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The Princess Alexa Foundation

Kids love to play dress up.  I frequently have an animal or a super hero running around my house!  Today’s organization celebrates this spirit of imagination for seriously ill children through dress up and play.

In June of 2008, Crys Aigner sat with her very sick daughter Alexa in a hospital room at Children’s Hospital in Dallas.  Alexa, who was wearing a princess outfit, turned to her and said, “Mom, I want to go to a pink park and I want a new pink dress.”  Alexa listed off several more things which her mom promptly wrote on a large piece of paper and hung up in the hospital room with the title, “Things I Want To Do When I Get Better”.  Sadly, a week later Alexa passed away, but that list lived on with her mom.

Crys Aigner founded The Princess Alexa Foundation in August 2008 in memory of her daughter Alexa Aigner, a beautiful 4-year-old girl who loved dressing up to escape the reality of cancer.  The mission of The Princess Alexa Foundation is to build that pink park and to carry Alexa’s love of dress up to other kids like her.  The foundation celebrates the childhood spirit of seriously ill children through dress up and play.  The key word there is “celebrate”- every day of life for these children should be celebrated and that is the main idea the organization wants to promote.

They are based in Keller, Texas, so that is where they are planning to build Alexa’s pink park.  They have given the park the name “Remember to Play” park and even have some concept drawings for a wheelchair accessible park.  You can see the drawing as well as a list of sponsors here.

The playground is just one of the programs offered by this organization.  They also collect donations for several Dress Up Closets around the state of Texas.  These closets allow seriously ill children staying in the hospital to pick out and keep a dress up outfit.  In addition, the Dress Up Delivery program allows people to request a Dress Up Delivery for a sick child and it will be shipped right to their door.

How can you help?

They are always in need of new costumes and accessories for boys and girls in sizes 2 through 10.  You can mail donations to the PO Box listed on their website.

They also accept cash donations either for the playground or their dress up program via PayPal.

You can learn more about The Princess Alexa Foundation at their website, princessalexafoundation.org.  There are some great videos on their website, including one featuring a fun dress up party at a local hospital.  You can also connect with them on Facebook or via e-mail.

 
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Posted by on February 8, 2012 in Nonprofit Organization

 

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Tatum’s Bags of Fun

In previous posts we have highlighted organizations such as Camp Get-A-Well-A and Sweet Dreams for Kids that make a hospital stay a bit better for kids.  Today’s organization has a similar mission.

Tatum’s Bags of Fun is a 501c3 non-profit based in Indianapolis, Indiana.  Their mission is to make a positive impact on the lives of every child diagnosed with cancer in Indiana (and beyond).  They do this by supplying a backpack filled with $350 worth of age-appropriate games, toys, and activities ideal for a hospital setting.  This helps to entertain and distract the children during their long and difficult battle with cancer.  Each year almost 300 children are diagnosed with a form of cancer in Indiana alone and since August 2008, Tatum’s Bags of Fun has been able to distribute over 900 bags of fun to children throughout the state.

Tatum is the 11-yr old fifth grade student and a two-time cancer survivor that is behind this organization.  In July 2006 Tatum was diagnosed with Ewing’s Sarcoma, a rare bone tumor, in her right femur.  She endured 13 rounds of chemotherapy and 3 major surgeries.  Tatum and her family received a tremendous amount of support from friends, family and the community during her treatment.  One of the gifts she received was a “Bag of Fun” from the Gabby Krause Foundation in Colorado.  Gabby lost her fight with cancer in 2004, but her family started the Gabby Krause Foundation in her memory and “Bags of Fun” was their signature project.  Tatum and her family were so moved by the gift and the concept that they began speaking with the Krause’s about bringing Bags of Fun to Indiana.  On August 1, 2008 a little over a year after Tatum completed her first battle with cancer, her family began distributing Bags of Fun.

Unfortunately Tatum was re-diagnosed with Ewing’s in November 2008, this time in her right lung.  Even though this was another setback, Tatum remained positive and confident she would beat cancer again.  Bags of Fun also provided an opportunity for Tatum to personally deliver Bags of Fun to her new friends that she would be fighting with.  Tatum completed her treatments in September 2009 and has remained cancer free!

Each Bag of Fun is provided to pediatric cancer patients free of charge and is theirs to keep.  The bags are delivered weekly to several Indiana hospitals.  Through an arrangement with the hospital, Tatum’s Bags of Fun receives a list of new patients including their ages and initials.  This allows them to abide by HIPPA regulations and ensure that each child receives just one bag filled with items that are age appropriate.   If the patient has a sibling, a game or toy is also provided to them. With toys and activities that are chosen by same age children, the Bags of Fun provides a way for kids to keep busy and happy during their hospital visits.

On the organization’s blog, you can see some thank yous that have been sent.  One mom said that it made her daughter’s day to get such a wonderful gift and another bag recipient said “no words that I can explain my appreciation and thanks”.

Monetary donations can be made directly on the organization’s website.

You can learn more about Tatum’s Bags of Fun on their website, tatums.bagsoffun.org.  You can also connect with them on Twitter, Facebook or their blog.

 
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Posted by on January 25, 2012 in Nonprofit Organization

 

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Help Harry Help Others

Kids Are Heroes is an organization that highlights kids who have done great volunteer work.  In the past we have profiled kids that were featured on the Kids Are Heroes site.  Harry Moseley is one such hero who left a legacy.

Harry’s story began in 2007 when he had problems with his eyes.  After many visits to the optician and the local hospital, the doctors gave him an MRI scan and discovered a brain tumor.  The tumor was in a dangerous place, deep in his brain, so it was inoperable.  Harry began chemotherapy treatments but unfortunately it didn’t work and his tumor grew.  His only other option was radiotherapy.  It was during these treatments that he met Robert Harley who was also having radiotherapy for a brain tumor. They had their treatment on the same day, every day for six weeks so they became very good friends.  In 2009 Robert became very ill so Harry decided to make and sell beaded bracelets to raise money for brain cancer research to help make him better.  Sadly four weeks into his campaign, his friend Robert died at only 55 years old.  Harry wanted to continue selling bracelets in Robert’s memory and to help make sure that no one else would have to go through what they did.

Harry continued regular checkups to monitor the size of his tumor.  It remained stable for two years but unfortunately, his health took a turn for the worse in July 2011 when he developed a blood clot on his brain.  He had an emergency operation on August 10th and remained in a coma for over eight weeks.  On October 7th, doctors advised Harry’s family to bring him home to rest.  Harry passed away peacefully in his mother’s arms on October 8th.  Harry’s campaign, however, continues to live on in his memory.

The mission of Help Harry Help Others is to raise as much money as possible to help fund brain cancer research and to raise awareness.  At the heart of this mission are Harry’s beautiful bracelets which act as a symbol for Harry, his campaign and what it seeks to achieve.  It was Harry’s dream that everyone in the United Kingdom would be wearing one of his bracelets.

In April 2011, Help Harry Help Others partnered with Cancer Research UK. As a result, the campaign now largely functions out of their head offices in Angel, London.

How can you help?

Help Harry Help Others welcomes all the support they are offered.  Volunteers have been key to helping raise money for the campaign.  They have opportunities locally for individuals or groups to fundraise for the campaign.  These fundraisers aren’t just limited to bracelet sales, previous groups have done bake sales, live music events, runs, and even jumping out of an airplane.  They also have a team of volunteers who help with bracelet production.

For those who live further away, you can still run a fundraiser and make your donation online or via the mail.  The organization’s website has a fundraiser pack available for download.  Anyone can also purchase bracelets online.

Harry’s organization has sold over 40,000 bracelets and raised over £185,000 (or about $280,000) for brain tumor research.  You can learn more about Help Harry Help Others on their website, helpharryhelpothers.com.  You can also connect with them on Facebook or Twitter.

 
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Posted by on January 4, 2012 in Nonprofit Organization

 

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Sweet Dreams for Kids

I have only spent the night in a hospital twice – one time for the birth of each of my children.  The pajamas that they provided were not comfortable – I prefer a stretchy pajama that moves with me as I toss and turn in the night.  Today’s organization understands that hospital pajamas are not just uncomfortable, but they are also a sign of sickness.

Sweet Dreams for Kids is a non-profit organization started in 2008 by the Berezovsky family.  They are based in Minneapolis, Minnesota with a mission collect and donate new, cute, cozy, and comfortable sleepwear to children in the hospital.  According to Wendy Berezovsky, “I started Sweet Dreams for Kids, after my youngest, who is now eight years old, was born with cancer.  I knew I wanted to do something to help bring a little bit of comfort to other families going through difficult medical situations.”

So, why pajamas?  When Wendy was in the hospital’s oncology floor with her youngest child, she had time to think.  She felt a need to do something good, something to put a smile on the faces of the kids there.  When I asked about the founding of the organization Wendy told me, “Every time I looked at my little girl in those hospital pajamas, it was that constant reminder that she was sick.  It is an unbelievable change when you put cute, cozy, and comfortable pajamas on kids in the hospital; the difference is amazing.  Unfortunately, it does not make their tough medical situation go away, but my hope is it makes them feel a little bit more like every other kid.  Kids at home are tucked in bed with pajamas that they pick out, and I believe kids in the hospital should be able to do that as well.”

Sweet Dreams for Kids

The Berezovsky family held their first pajama party in December 2008 at their children’s school.  Wendy stated, “It is so amazing to see your own kids and their friends so excited about helping other kids.”  Since that first party, they have donated over 10,000 pairs of pajamas to hospitals locally and around the United States as of August 2013.    The family wants kids to feel the comfort of home, even when they are in the hospital.  They hope to bring a little extra smile to the children and hope it makes a difference in their recovery.

During one visit to a hospital to drop off a donation, Wendy heard a little girl screaming.  In the room, she saw the girl’s mom and a nurse right by her bed.  When they explained that Wendy was bringing her a new pair of pajamas, the girl stopped crying and calmed immediately.  Wendy says she gets so happy when she walks into her basement and sees it filled with pajamas ready to deliver.  She smiles knowing that each pair of pajamas means one child in the hospital will hopefully be smiling a little more.

Sweet Dreams for Kids collects new pajamas for kids from birth to teenagers.  They have a vision to fill every children’s hospital with pajamas for kids to choose from.  Volunteer opportunities include hosting a pajama party, assisting with pajama sorting, calling businesses and schools and fundraising.

You can learn more about Sweet Dreams for Kids on their website, sweetdreamsforkids.org or connect with them on Facebook or Twitter.

 
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Posted by on October 12, 2011 in Nonprofit Organization

 

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Cleaning for a Reason

When my mom was going through treatment for cancer, I saw firsthand how draining it is.  My mom had no energy after treatments.  Luckily my dad was able to keep the house clean.  Today’s organization fills a need for those women in treatment that don’t have someone to help with house cleaning.

Cleaning for a Reason recruits maid services all over the country to give away free housecleaning services to women who are battling cancer.  They are the only non-profit offering housecleaning to women with cancer.  According to Debbie Sardone, Founder of Cleaning for a Reason, “As a maid service owner, I understood this need and wanted to do something about it, not just in my own home town, but all across the nation, so Cleaning For A Reason was born.”

The organization partners with cleaning services around the United States and Canada.  They are close to having 1,000 partner services around the country offering free cleaning services to women undergoing cancer treatment.  Since their founding in 2006, over 4,500 women have received free housecleaning services through the program. 

If you or someone you know is undergoing cancer treatment, you can search for partners of Cleaning for a Reason on their website.  If you are a maid service and would like to sign up as a partner, you can fill out a form on the website to start discussing the possibility.

Others can also help by shopping in the Cleaning for a Reason e-store.  A variety of items are available including apparel, pins, mugs, camp chairs and more!

Learn more about Cleaning for a Reason on their website, www.cleaningforareason.org.  You can also follow them on Facebook and Twitter.

 
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Posted by on July 27, 2011 in Nonprofit Organization

 

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