Friday, September 19, 2014


Yesterday I teased you all with a post about my brilliant, crazy idea. I gave you a little background and foreshadowing and then I left you hanging until today. I thought it was a little much to write all in one post. And I also wanted you all to be as excited as I am about it.

I can't quite explain it, but ever since my mom's diagnosis I've had this prompting to be proactive in the dementia community. I think I've shared one experience before, where I had this distinct thought that I could either let this trial overcome me or I could try to learn something from all of this and do something positive in spite of it. Little by little, I've become proactive and involved in the dementia community; from my blogs to joining the Walk to End Alzheimer's. But I still feel like there's something more I could (or should) be doing to help families affected by this cruel disease.

I've been sitting on this idea for more than a year now. I made mention of it earlier this year to my sister, Christina. Though she liked the idea, I held myself back from going forward with it due to my doubts and fears of failure. I had those same doubts about writing this blog. I remember when I published by first post; my stomach was a ball of knots. I didn't know how people would receive my blog, of my sharing such a difficult and personal journey. I remembering telling myself it was mostly for me and my family anyway-to keep everyone up to speed; nobody else would care what I had to say. Two years later, with nearly 55,000 blog views, I get emails from people around the world thanking me for sharing our story. I never would've guessed I could reach so many people. And to think I almost didn't go through with it. I don't want that fear of failure to hold me back from potentially accomplishing a great work.

And so, it is with much excitement (and fear) that I announce to you all my plans to move forward with establishing a foundation in my mother's name; afterall, it is she who has inspired me and prompted me to do this work (the official name is still to be determined). This foundation will be unique in the dementia community because the target is not to raise money for research and a cure. Rather, this foundation will be established specifically to help families like ours, who are stuck in the middle class with no means or support to care for their loved ones. Through sponsors and fundraisers, I would like to issue caregiving grants to those people who have limited options on the table to care for their loved one. We know the heartbreak and the stress that caregiving can bring to a family; particularly when a loved one is hit at a young age. I want to help ease that burden for others who are struggling and give them options for care that they can feel confident about. There are a lot of details to iron out, but I will post all the details as they come. I estimate that to really get this established, it could take a good year to get going. I will keep you all updated in the process!

It is going to be a lot of work, and I know a lot of people may think I'm crazy. This is very much in it's infancy; but I have done a lot of research and know the steps I need to take to get started. This wasn't an overnight decision; I've been doing my homework. I have my first 2 board members: Melissa Ballantyne (a family friend, helping on the accounting/financial end) and Christina Avila (my sister). Both ladies have experience with setting up non-profit organizations (which is how this foundation will be set up) and I'm pleased to have them on my board. We are looking for a few others to join us as well. This is partly why I am coming out with this announcement now rather than once it is formally established; if anyone out there reading this post is interested in joining the board or helping in any other way, please contact me. I'm especially interested in people with experience in marketing, fundraising, etc. Please keep in mind, however, that it is all volunteer based at this point.

I am now asking for one favor from each and every one of my readers: SPREAD THE WORD!! Tell your neighbors, tell your friends and family, tell your Facebook community and share this post!! You never know who could be out there, silently struggling and aching for help. And you never know who might be out there who can assist in this worthy cause. In order for this idea to expand, I need to get the word out! Be watching my page (you can follow me on Facebook if you aren't already); I'll be doing some fun things to encourage my readers to get the word out.

Thank you all for your continued love and support throughout our dementia journey. Thank you to those who have sent me emails encouraging me and helping me to feel like I'm not alone. I'm looking forward to giving back to my dementia community!!


  1. Cassandra, good luck! I'm inspired with your desire to help others in your community! 16 years ago after my son Jacob was born Jeff and I became involved in the Little People of America (dwarfism) community. I have to say even though we do a lot of volunteering for it I always feel that we are blessed for it and get back when we give. I think what your doing is great!

  2. I'm SO excited to see where this goes! I have a feeling this will be HUGE one day. This is so needed right now. Too many people are struggling trying to find ways to get good care for their loved ones. Brilliant idea and I will do whatever I can to help!

  3. Cassandra, what an awesome idea! We were definitely one of the families that felt that monetary crunch. And there are so many more who are struggling daily. Bless you for wanting to reach out and help others as you endure your own trial. I wish you all the best!! Let me know if I can help.