Tag: Advocating for Others

Spread the Word: September 26th is Mesothelioma Awareness Day

September 26th marks Mesothelioma Awareness Day! This day honors those have battled or are still battling mesothelioma. This day is also meant to spread awareness for the disease and the toxic natural fiber that causes it.

What is mesothelioma?

You may ask, what is mesothelioma? It’s a whole lot more than the commercials you see on television. Mesothelioma is a rare and very aggressive cancer caused by exposure to asbestos. It can affect the lungs, abdomen and heart and is typically diagnosed in the later stages due to a long latency period that makes detection difficult.meso1

Once symptoms arise, they are difficult to detect and decipher as mesothelioma symptoms since they are common ailments, like fatigue, hoarseness, nausea, weight loss, chest pain and coughing. It is easy to look past these things, or even at times have them misdiagnosed as other diseases or health conditions.

The prognosis carries a devastating life expectancy of 12-21 months. The saddest part is that it’s totally preventable. We must all come together to spread awareness for this awful disease. Approximately 3,000 new mesothelioma diagnoses are given each year, and about 2,500 people will died from it each year in the United States. Globally, the annual death toll jumps to 43,000.

While the world is making strides to ban asbestos, we’re still not all the way there. Over 60 countries have banned the toxic substance, and another small handful are expected to ban asbestos by 2020. It is sad to say that the United States does not fall under either of those buckets–another reason why we must continue to spread awareness!
How can you make a difference?

To best protect yourself and your loved ones from the dangers of asbestos and the possibility of mesothelioma, be on the lookout for asbestos dangers in your home and environment. Houses that were built before the 19meso70’s very commonly contain asbestos. For a list of places and products that may contain asbestos, click here.
In addition to educating and protecting yourself and your family, you can help spread the word through your blog or social media platforms. Every new set of eyes on this message means we’re a step closer to 100% awareness of mesothelioma and the dangers of asbestos. When every person knows, they can then protect themselves and avoid the very unfortunate health complications.

If you’d like to help ban asbestos, you can sign a petition listed by the Asbestos Disease Awareness Organization (ADAO) here! As mentioned above, approximately 60 countries have banned asbestos, which means there’s a lot of ground to cover in terms of banning it worldwide. We cannot stop fighting until this toxin is banned globally!


screen-shot-2016-09-23-at-10-29-49-amThe Mesothelioma Cancer Alliance is dedicated to serving mesothelioma victims and their families. Make sure to follow them on Twitter and Facebook for the latest updates!

Join us to Color The World Orange for CRPS/RSD Awareness on Nov. 7

sunset logo 2016

The third-annual Color The World Orange is Nov. 7 and we need your support!


Color The World Orange  is an annual event held the first Monday of November to spread awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). Around the world on Nov. 7 supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.


There are many ways to participate and we encourage everyone to be creative and most importantly have fun. The easiest way to get involved is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY.


Screen Shot 2016-08-23 at 3.38.15 PM
In past years, supporters have thrown orange parties, where everything on the table was orange. Supporters have hung signs and handed out pamphlets about CRPS/RSD. Some have met with politicians to discuss CRPS/RSD and others have spoken to local media, which led to news stories and TV segments.Screen Shot 2016-08-23 at 3.39.04 PM


Many offices and schools have gotten involved hosting orange days, where employees and students are encouraged to wear as much orange as they can. Some offices have allowed employees to display a basket of orange ribbons for colleagues to wear, along with informational pamphlets so co-workers can learn more about CRPS/RSD. Please make sure to get the needed permission before planning any events. You can download Color The World Orange pamphlets from our website at:


Another great way to get involved is to request that a building or landmark in your area be lit orange on Nov. 7.


We are still in the planning stages, but already 10 landmarks and buildings have agreed to turn orange on Nov. 7 for Color The World Orange 2016 including Niagara Falls, the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive Legislative Building, the Houston, Texas City Hall, the Skyview Atlanta in Atlanta, the Terminal Tower in Cleveland, the SunTrust Bank building in Tampa, Florida, Emery Towers in Bradford, Pennsylvania and the Crazy Horse Memorial in South Dakota. The Myriad Botanical Gardens in Oklahoma City will be lit orange Oct. 31 – Nov. 4.


Screen Shot 2016-08-23 at 3.38.30 PMWe had a goal to light the night orange in 2015 and due to the hard work of Color The World Orange supporters, more than 30 buildings around the world turned orange to bring awareness to CRPS/RSD. We hope to top that this year!


For the third year in a row, a supporter will run the NYC Marathon for Color The World Orange and for the first time, a supporter will run the Chicago Marathon for Color The World Orange. Supporters in the UK and Australia have also hosted walks and challenges to bring awareness to CRPS/RSD.


In the last two years, Color The World Orange events and supporters have raised more than $11,650 for the national non-profit RSDSA to be used for research.
In addition, last year 76 proclamations were granted by U.S. Governors and local officials recognizing Color The World Orange 2015 and November as CRPS/RSD awareness month.


Color The World Orange was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The aim of the event is to have one day where everyone affected can join together for one common goal—bringing awareness to CRPS/RSD!


Screen Shot 2016-08-23 at 3.37.48 PM

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

So let’s all work together to make Color The World Orange 2016 the biggest yet by wearing orange, and encouraging friends and family to wear orange! Don’t forget to post all of that orange to social media with the hashtag: #CRPSORANGEDAY.

Let’s show the world that while we are in pain, we are strong!

For more information and more ideas on how to get involved, please visit our website at: or our Facebook page at:

sunset logo 2016

Color The World Orange is an annual event held the first Monday of November to bring awareness to Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). It was started in 2014 to bring global attention to CRPS/RSD.

Interviewing Health Activists: Marla Murasko, Special Mom Entrepreneur

Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.

WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?

Marla: I have always been involved in the special needs community even way back to my high school years.  I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions.  So my passion for helping children with special needs started a long time ago.

However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart.  Now it was my son who I was advocating for, so it got more personal for me.

WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?

Marla: My health activism truly began the day my son was born.  When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis.   We declined that test for personal beliefs.  However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born.  Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief.  Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate.  What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say.  That’s normal, that’s part of the grieving process.  But that the greatest gift you can give your child is to advocate, educate and take part in their lives.  You are going to be their voice.  So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc.  The more informed you are, you can make better decisions with regards to the care of your child.

WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?

Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed.  Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey.  I did a lot of research as I documented different medical terms, associations, etc.  My only advice about writing a book is be patient and passionate about what you are writing about.  It may take a while to finish it may not, but you want it to be genuine.

WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?

Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed.  As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information.  But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both.   However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective.  So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.

WEGO Health: What made you take your crusade online? What’s the best part about leading your community?

Marla: The best communities are online.  You don’t have to be local to other mothers to find a common bond.  You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.

I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.

WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?

Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.

My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.

WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?

Marla: That we are parents also, we just may have a few more struggles than most.  Engage us, engage our children.  The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.

WEGO Health: How do you raise awareness? What can others do to get involved?

Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board.  Just get involved with something you are passionate about.

WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?

Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.

I envision providing workshops, seminars, and creating an online quarterly magazine.

WEGO Health: What do you do when you’re not advocating?

Marla: Besides run my businesses, I enjoy my family.  Spending time with them is extremely important to me, creating memorable moments is what it’s all about.

Thanks so much for sharing Marla!

Be sure to check out Marla’s work around the web:


Interviewing Health Activists: Adrienne Bashista on Advocating For Your Child

Today we’re excited to share with you an interview with a Health Activist caregiver, parent, author, blogger, and hard-working advocate for another. Adrienne Bashista is active online in numerous different places, co-authored the book Easy to Love but Hard to Raise, writes at a blog of the same name, active in the online ADHD, FASD, and developmental disorder communities. Her mission online, which is reflected wonderfully in this interview, is to be real about the challenges and struggles that come with caring for a child with “invisible” disabilities. I think you’ll enjoy what Adrienne had to say as much as I did, and hopefully learned a thing or two. –Amanda


WEGO Health: What inspired you to become a Health Activist Caregiver? What inspired you to take the next step toward advocating for your child?  What inspired you to start your site/book?


Adrienne: Like many (if not all) parents of kids who have special needs, I started my journey simply in search of someone to talk to. Someone like me; someone with a kid like mine. The parents who I met while raising my older, neuro-typical son, have become my best friends. They are great supporters and we share much in common, but when it came to the specialized parenting that my younger son required it eventually became clear to me that they couldn’t relate. The early days of parenting my son – before we really found the medical and therapeutic help we needed – were extremely difficult and stressful and I’m sure it often sounded like I was blowing things out of proportion or that I was complaining too much. Certainly decisions we made about doctors and assessments and therapies were greeted with skepticism. Before the experience of raising a child with a developmental disorder, ADHD, and FASD I would have probably been skeptical, too. My whole world view has changed. Because of this world view change I became desperate to find other people like me; thus my journey to create our book and accompanying blog: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories.


Kay Marner (the other co-editor) and I came up with the idea for the book because we knew that although it seemed like we were the only people struggling with these parenting issues, that indeed, we were not alone. There were plenty of parents just like us – but where to find them?  We felt there needed to be a collection of essay about people who were parenting children who had emotional and neurological difficulties that resulted in behavioral problems. Kids who couldn’t be managed using instinctual parenting methods, or sticker charts, or magical countdowns, or whatever methods worked for kids whose behavior issues weren’t as great as our children’s.  The response to our original call for contributions was wonderful: we now have 30 parent-contributors and almost 20 “experts” who helped us with the book, but what’s been even more wonderful is the community we’ve formed through our blog and our Facebook page. Finally I have people around me – even though their proximity is virtual – who have been in my shoes. It’s such a comfort.


WEGO Health: What do you wish others knew about being a Caregiver?

Adrienne: How conflicted we feel on a daily basis. I think it’s easy to portray parents of special needs kids as ‘saints’ or ‘wonderful’ or as doing something that other people can’t do, but in reality we are simply doing what we have to do, like all parents. It’s really easy to feel resentful about all of it, but at the same time it’s completely taboo to be angry about parenting a child with special needs. I love my son with all my heart but he is very, very difficult to parent. That’s the truth of the matter. Being told “I could never do what you do,” makes me angry – both because I think most people rise to the occasion when it comes to their children, but also because it puts me on a pedestal, and that’s an uncomfortable place to be. It’s a lot further to fall.

On the Easy to Love blog as well as the Mom’s View of ADHD blog, where I’m a contributor, I try to be as honest as possible about my experiences. If that makes me sound like an angry, resentful person, then so be it, but hopefully I’m coming across as a human being who’s been put into a difficult situation. And hopefully people can relate.


WEGO Health: How do you maintain balance between being a Caregiver and managing your own health, work, etc.?

Adrienne: Ha ha ha! Balance? What’s that?

Just kidding. Actually, these days my life feels very balanced, although from an outsider’s perspective it may look somewhat skewed because of the choices I’ve made to keep my family life sane. First choice: I quit my job. This was a career in which I’d had 15 years invested and a Master’s Degree…but I couldn’t do it and take care of my family’s needs at the same time. Next choice: we pulled our youngest son (our ‘easy to love’ child) out of school so we could homeschool him. In school he was crashing and burning. It was a real square-peg-round-hole situation and it created all kinds of stress in his life and in ours. The school was not very responsive to his needs so we made the choice not to stay and fight for services – which probably would have been at least 2 more years of his failure and my mental health sacrificed – but to quit.

Both of these decisions made me MORE of a caregiver for our family, but both were the right decisions for us and have resulted in a more harmonious life.  As for the rest of it – it gets fit in whenever and wherever it can. Although I quit that full-time out-of-the-house job I still do other paid work, but it’s work that can be done while kids are at playdates or at night or on the fly. And it turns out that doing this work – writing and editing books and blogs and doing PR and marketing for our family business – is rewarding and important in a way that my previous career wasn’t. With increased quality of life comes less stress, with less stress comes better health. So it all works out.


WEGO Health: How has the internet and social media changed the role of a Caregiver?

Adrienne: I’ve only ever cared for my child during the age of social media, so I can only imagine how difficult and isolated parents caring for kids like my son felt without online support. I live in a pretty small town and although I know of support groups for parents like me, they meet an hour away from where we live and only once a month. With our blog and our Facebook page, as well as a couple of other great on-line support groups I belong to, I can post a question and have a range of answers within minutes. I also don’t think I’d know as much as I do about my son’s various diagnoses had it not been for the Internet. FASD, in particular, is something that there’s not much written about, nor is there much support for – online or offline. It’s getting better, but without the internet I’d probably know next to nothing. I predict that social networking will be where advocacy for kids and families impacted by FASD will really take off. I’m excited to be a part of it.


WEGO Health: Anything else you’d like to share?

Adrienne: Just that I’d like to invite anyone reading this who is taking care of a child whose behavior pushes your parenting to the limits on a daily basis to join the conversation at the Easy to Love but Hard to Raise blog and Facebook page. We are looking for guest contributors. The more the merrier!


Thanks so much for sharing with us, Adrienne. Your candid approach to these tough topics is inspiring and no doubt really influences your community in a positive way.

Check out more of Adrienne’s work!

Check out Easy To Love, and her Publishing Press DRT Press – Books for Families, and Like Easy to Love on Facebook.


Grandparents and Caregiving – The “Skip” Generation

Today we have a post written by Tayla that takes an inside look into a specific type of caregiving and the interesting implications therein. –Amanda


Grandparents and Caregiving – The “Skip” Generation

by Tayla Holman

A growing area of caregiving is that of grandparents taking care of their grandchildren, or even their great-grandchildren. Grandparents who are raising their grandchildren are often referred to as the “skip generation.” A “skip” generation refers to a generation two or more below a person. The resulting household is sometimes called a “grandfamily.”


There are almost 6.7 million children in the United States living in grandfamilies, according to Census data from 2009. That’s a 64 percent increase from 10 years ago. 2.5 million children are living primarily with their grandparents, with neither biological parent present in the home. The economy has played a big role in grandchildren living with their grandparents, due to many parents – especially those who are young or single – being financially unable to take care of their children. There are other reasons, such as abuse and neglect, that also lead to more grandparents taking in their children’s children.


So what does it mean to be a grandparent providing care to one or more grandchildren?


It may mean having to postpone retirement plans for a couple of years, or losing post-retirement freedom. It may also mean having to keep a closer eye on finances now that there are more mouths to feed. It also means becoming a parent all over again, going to PTA meetings and helping with homework. And that’s just for grandparents taking care of grandchildren who are healthy.


For grandparents who are taking care of grandchildren who are mentally or physically ill, the responsibility can be an even bigger strain, both financially and mentally. There are some programs in place, such as the “Grandparent Subsidy” in Washington, DC, that provide financial assistance to grandparent caregivers, although that program recently received cuts to its budget.


As a grandparent caregiver, it is important to know that there are resources out there. We’ve already compiled a brief list, but there is one more that should be added. is the website for the Grandfamilies State Law and Policy Resource Center, which is a collaboration between Casey Family Programs, the American Bar Association’s Center on Children and the Law and Generations United. offers information about adoption, financial assistance, caregiver support programs and more. This site is essentially a one-stop destination for all things related to being a grandparent caregiver.


With more and more grandparents becoming caregivers, the need for resources – financial and otherwise – is steadily increasing. What are some other websites or programs we missed? It is said that it takes a village to raise a child, so where else can grandparent caregivers find support once they’ve reentered parenthood?



Ready To Learn More About WEGO Health?

I’m ready to work with a Patient Leader