Child loss awareness in an unexpected place

I'm sure almost everyone has heard that Barbara Bush died recently.  Have you read her obituary or any stories on her life?  I can tell you that I learned something the other day while reading her obituary.

She lost a daughter at age 3 to leukemia.

Yup.  One of the most respected First Lady's experienced child loss.  One article I read said that she refused to let anyone cry at her daughter's bedside while she was in the hospital.  Another article said they traveled the country looking for treatment.  Guess what?  Many parents of those affected by rare disease do the same.

What really caught my eye this morning was an image of Ms. Bush greeting her daughter Robin in heaven, with both of them running to each other.  Have you seen it? You can see it in this article. There are many other articles with the same image.  I chose this one because of the 2 videos in it - one of Mrs. Bush talking about her daughter and the other a letter.

Although many years have passed, talking about child loss and grief is still a difficult subject.  How many more years will it take to be an acceptable topic of conversation?

Get Over It

Thankfully I have never actually heard the words "Get over it".  There have been many people, by their actions, who have made me feel like I should be "over it".

Well, here's the news flash - there is no "getting over" the loss of a child.

I read a great article about "getting over it" the other day.  I encourage everyone, especially those who have never lost someone close to them, to read this article.

The loss of a parent is similar to the loss of a child.  There is one significant difference - a parent had a lifetime of experiences - including going to school, getting married, having kids, etc.  Losing a child also means losing all those experiences.  It's a very different grief process, one that you never "get over".

The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.

For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page

Middle of May means....

For many, it means Mother's Day, celebrated on the second Sunday in May.

Did you know the first Sunday in May is International Bereaved Mother's Day?

I saw this article the other day, What Grieving Mother's Want For Mother's Day. Mother's Day is recognized as a celebration of being a mother. But what about those who don't have their children to celebrate? Are they any less than mother?

So between last Sunday and this Sunday, please reach out to a mother who has lost their child.

It's October - Post 4

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 3

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 2

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October

Ok, so we are over 10 days into the month.  Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

Another year

We just returned from the most recent NNPDF Family Support and Medical Conference.  This year we were in Danvers, MA.

Every year I meet new people, see old friends ("family") and we all feel safe.  It's a place to learn from the research, learn from each other, and not be afraid to share your thoughts and feelings.

Among all the sadness, with the memorial service and seeing kids you saw walking 4 years ago now in wheelchairs, there is always fun.  We celebrate life, we celebrate each other, we celebrate milestones.

Please vote for Matt Painter

It's basketball season.  Every year Coach Matt Painter has been competing in the ESPN Infinity Coach's Challenge.  

 

 

 

Coach Painter supports the Smith Family BReaK Thru Fund, a family run organization that supports research into Niemann Pick Disease.

 

If Coach Painter wins this challenge, $100,000 will be provided for research.   This is the final round of the Challenge, and you can vote every day until March 15. 

 

It only takes a few seconds to vote, it is FREE, and you do not need to get on the email list, so you won't get any junk email.

 

Here is the link to vote: http://www.votemattpainter.com

Here is more info on the Smith Family BReaK Thru Fund: http://www.breakthrufund.org/

RARE Patient Advocacy Summit - and Online!

I saw this on the Global Genes webpage and wanted to share it.

2014 RARE Patient Advocacy Summit

Please join us for our

3rd Annual “RARE Patient Advocacy Summit”

held on September 11-12, 2014

at the Hyatt Regency in Huntington Beach, California.

Empowering Patient Advocates to Become Successful Activists

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step. The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and provide the discussion, insights, and tools to move down this advocacy path, equipped and prepared.

Our Patient Advocacy Summit will offer practical advice, case studies, and networking opportunities as we learn from one another. The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be the most effective in helping advocate for their disease/disorder.

You will:

• Hear from experts on a variety of topics affecting the rare disease community
• Understand and create strategies for challenges facing caregivers
• Be introduced to new science advances
• Learn how to become an unstoppable advocate and how to build an effective organization
• Become equipped and educated around successful lobbying
• Understand Drug Development – Why patients are playing a critical role and what that is
• Have opportunities to network with other rare advocates and rare industry partners

By attending this two-day event, you will meet new friends and colleagues, gain a new perspective on the complexities and questions that need to be considered in order to become effective advocates for rare disease patients and you’ll be ready to help make advances for the rare diseases we represent.
For those not able to attend in person, you will be able to join via Live Stream.

In-Person registration includes:

* Thursday Patient Advocacy Summit (12:00 pm to 6:00 pm)
* Friday Patient Advocacy Summit (8:00 am to 6:00 pm)
* Friday: Networking event (evening)
* Saturday: Day of Beauty (Advocates only)


Who Should Attend:
>Rare disease patients, caregivers, family members and friends
>Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register HERE


Thank you to our generous sponsors!

Webinar - Successful Online Fundraising on July 30

I saw this on the Global Genes webpage


Using Successful Online Fundraising Strategies
Date: July 30, 2014
Time: 10:00 am PT / 1:00 pm ET

Register here!

Online fundraising has made it easier to raise money to support your cause at anytime, anywhere. But if the possibilities are endless, why do so many of us feel disappointed when all of our efforts amount to very little?

This webinar will address why this often happens and the steps you can take to ensure your fundraising efforts run more smoothly and successfully. This includes understanding the necessary prep work, the importance of relationship building, social media implementation, and other considerations.

Panelists will share strategies they have adopted, challenges they have overcome, and success stories.

If you are unable to attend, please register and we will send the link to the slide presentation and recording after the event concludes.


Panelists:
Bill Strong, Founder, Gwendolyn Strong Foundation
Bill Strong is husband to Victoria and proud dad to Gwendolyn and Eleanora. Bill and Victoria started the Gwendolyn Strong Foundation (theGSF) in 2009 after Gwendolyn was diagnosed with spinal muscular atrophy (SMA) type I, a degenerative and terminal disease. The GSF focuses on harnessing the power of technology and social media to advocate and fundraise for the SMA cause through its motivational NEVER GIVE UP. brand.

Annie Mitchell, Social Media Director, Cure JM Foundation
Since 2008, Annie Mitchell has volunteered as the Director of Social Media for Cure JM Foundation, a nonprofit organization devoted to Juvenile Myositis (JM) research, support for families, and awareness of a rare autoimmune disease her daughter had been diagnosed with the previous year. Collaborating with Cure JM leadership, staff and volunteers, Annie led international social media teams’ efforts to help win grant contests based upon either crowd-funding or internet/social media voting – Crowdrise Holiday Challenge (2013) – $100,000; Chase Community Giving Grant (2012) – $50,000; Pepsi Refresh Grant (2010) – $250,000. Annie Mitchell has served on the Board of Directors for Cure JM Foundation since 2011.

Molley Lindquist, Founder & CEO, Consano
Molly Lindquist, a mom and breast cancer survivor, founded Consano, a 501(c)(3) crowdfunding platform for medical research, after her cancer diagnosis in 2011 at the age of 32. Before taking on her toughest job as stay-at-home mom to her two daughters, Molly travelled the globe sourcing products for World Market and doing company planning for the Banana Republic brand of Gap Inc.. Molly blogs about her cancer experience for the Huffington Post and was named a 2014 Orchid Award Winner by the Portland Business Journal.

Moderator:
Daniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

Thoughtful quote for today

I came across this interesting quote today:

"Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't."
-- Richard Bach,
American writer

There are so many reasons to be alive. To smell the flowers, to see the sunsets, to be loved and to love others. But what is your personal mission in life?

Is it to annoy others? Is it to make every small problem (molehill) into a major problem (mountain)? Or is it to help others? Is it to advance a cause? Is is to be there for others?

Think about your personal mission in life. Is it something you want to change about yourself? Are you happy with what you are doing?

Whatever your mission is, you have everyday of your life to do it, because your mission isn't finished while you are alive.


*********************


I don't know if I had a mission in my life - except to be a good person and to love and be loved. All of that changed when I had Dan.

All of a sudden, he became so much of my life - so much of a reason to live my life for him. Things I did, I tried to do for his well-being. When he got sick, really sick, I wanted to be by his side every minute of every day. I went to work because I had to, not because I wanted to. And when he died, I found my mission.

I needed to tell the world about my son - the fighter, the one who endured pain and challenges that I never knew about because he couldn't tell us. The one who got the "short end of the stick" in the medical world because we had doctors who didn't know what they were looking at, who didn't listen to us when we told them we had concerns, who didn't believe us when we identified specific medical issues.

Now it wasn't all the doctors, and once we finally made our presence known by fighting back against them, we were able to provide him some comfort. But he still endured more than he ever should have, more pain than a child should have to endure.

So my mission became to help spare other children that pain and help other families find ways to cope with losing a child.

I sought out the NNPDF to find what I could do to help. I'm now the Treasurer. I was talking with the doctors and researchers (some international) 3 days before Shelby was born.

I am open about losing a child to a rare disease. I am not afraid to show my pain and shed my tears in that grief process. I hope I have brought the subject of childhood death into the "open" and made it more of a discussion.

I have discovered that I want to spend more time with Shelby and if I could, I would be a stay-at-home mom. But that is still a dream, as food, shelter, and medical insurance are important.

What if ?

This was my horoscope from a few days ago:

Is there a chapter from your life that you would love to dramatically revise? Do you keep mulling this thought over and over in your mind, wandering "what if" I did it this way or that way? If so, you surely know that you cannot rewrite history. You cannot remove that chapter and replace it with something else. But what you can do is go back over it (but not obsessively) and try to draw some kind of wisdom from it. And then, instead of trying to rewrite what can't be rewritten, write a new and wonderful chapter that will incorporate what you learned. -- Copyright © DailyHoroscope. http://bit.ly/DHmobile

 ****
I'm sure all of us have some chapter in our lives that we want to rewrite.  But since we can't we need to learn from it and move forward.

For me, there are so many things I would have done differently with Dan.  Some decisions I made because I didn't have enough information to make a better decision.  Other decisions were made because I didn't have enough time to make a decision. And still other decisions were made because I didn't fight for what I wanted.  But I can't go back now, I can't save my baby boy.  I have to live, learn, and share my new knowledge.

This is why I created a group for parents of kids with special needs of any kind.  We share information with each other that you can't get elsewhere, like what does Medicaid cover or who to contact for some particular equipment.  We share resources like places that are wheelchair accessible or online resources or classes on how to advocate for the services your child needs in school.

This is also why I wanted to give back to the Niemann-Pick Disease community. I joined the Board of Directors to be a vocal voice for all the families that don't know what they are dealing with.  To provide assistance and guidance to those who are newly diagnosed or are overwhelmed.

Take a minute and re-read the horoscope above and think about what you can learn from the chapter of your life that you want to rewrite.  And how you can incorporate those lessons to your next chapter.

2013 RARE Patient Advocacy Summit

Copied from: http://globalgenes.org/2013-rare-patient-advocacy-summit/

Register for the free webcast even if you can't attend the entire day so you are notified when the videos are posted.

Come join us for our 2nd Annual “RARE Patient Advocacy Summit”
to be held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.

Register today!

Seating is limited for in-person participation.

Webcast registration available for those unable to attend in person.

From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference
Join Global Genes | RARE Project for a unique and interactive educational experience at our 2^nd Annual Patient Advocacy Summit on Friday, September 20, 2013.   There is no charge to participate in this event.

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step.  The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.

The summit will offer practical advice, case studies and networking opportunities as we learn from one another.  The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be most effective in helping advocate for their disease/disorder.

Attendees will:

• Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.
• Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.
• Learn the importance of patient registries, the different types of registries and how advocates can support them.
• Explore the role of foundations and advocates related to scientific discovery and drug development.
• Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

At the end of this day-long event, each participant will gain perspective on the complexities and questions that need to be considered in order to become effective advocates for the rare disease patients and help advance therapies in the rare diseases we represent.

Who Should Attend:

• Rare disease patients, caregivers, family members and friends
• Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register today!

Hotel and Travel Information

Sponsor Information

To become a sponsor or for more information, please contact Nicole Boice.  We look forward to seeing you at this year’s summit.

 View videos from our 2012 event.

2013 Registration

Register today!
View Summit Details
View Summit Agenda