A recent conference held at the New York Academy of Science asked a downright outrageous question: Can dementia be prevented by making changes to your diet? In this podcast we look at what the answers might be.
Podcast listeners learned a lot over the past two months about neurodegenerative dementia – what it is, what it isn’t, and how heartbreakingly little medical science can do right now to treat it. In that context, a recent conference held at the Academy asked a downright outrageous question: Can dementia be prevented by making changes to your diet? In this podcast, we hear answers to that question, some of which are surprisingly optimistic.
Listen to the podcast here.
In July BBDF’s Principal Scientist, Dr. Danielle Kerkovich, and I attended the Batten Disease Support and Research Association’s (BDSRA’s) annual conference in Chicago. This event is always a great way for us to connect with families in-person and we were happy to get to visit with many of you and meet your kids.
While at the conference we had the pleasure of going to dinner with two very special sets of parents. The Currans and the Phillips are on the opposite ends of their journey with juvenile Batten disease. Nick Curran is a healthy 23 year old and Hudson Phillips was just recently diagnosed at 6 1/2 years old. Our conversation made me realize how important connecting with other affected families can be and I would like to facilitate more of that for CLN3 families. The Currans and Phillips shared nutrition strategies, anecdotes about symptoms and siblings, and asked Danielle many questions about research opportunities. I was humbled to see how much responsibility these parents feel to make sure their kids are comfortable and happy in the absence of any medical or scientific guidelines. I believe just talking to each other gave them confidence and a feeling of support and encouragement to continue making decisions that are in the best interest of their kids.
Though I think there is nothing better than visiting face-to-face, I know that attending the conference is not feasible for everyone. BBDF supports a Facebook page, a Batten Map, and the Batten Blog. We’ve developed these tools as a way to help more JNCL affected families connect with one another. I encourage you to use them – like us on Facebook, comment and share; add your family to the Batten Map so we can show strength in numbers; and follow us on the Batten Blog and please send us information to post and share–your own personal stories inspire others. If you have other ideas, please let me know how we can facilitate connections.
One of the reasons Danielle and I attended the BDSRA conference was to connect with families in a very specific way. The Phillips and Currans and many other JNCL families participated in a research project while at the conference. BBDF is funding a $0.5 million project with the New York Stem Cell Foundation to create iPS stem cells, a tool that will allow researchers to conduct experiments on actual brain cells with juvenile Batten disease. This is a game-changing discovery. Click here to read more about how it’s done and why it matters. We rely on affected children and their parents to provide skin punch biopsies to create these cells and so many families were willing to do that. We are grateful for their participation. This project wouldn’t be possible without them. If you are interested in participating in this research or have questions about it, please email me.
That was a lot to cover. Thanks for reading through and considering ways to connect with other families and participate in research opportunities. You are the reason we exist and we are committed to finding a cure for juvenile Batten disease. Stay tuned for exciting announcements in the coming months. And please reach out to me any time with ideas, suggestions, questions or concerns.
Wishing you the very best,
Mary Beth Kiser | President and CEO
Beyond Batten Disease Foundation
Have you ever wondered if you are relevant, significant, or if anything you do really matters? Sometimes I get moving so fast, occupied with my daily activities, and whirling in a million directions, that I wonder at the end of the day, if any of it really mattered…….does anything I do count?
I received a card in the mail the other day from Whitney, a childhood friend, and the cover read: “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible” – Francis of Assisi.
That gave me pause for reflection because certainly Craig and I know that Beyond Batten Disease Foundation was created by a “necessary” response to give hope to our child, Christiane. What came next was the “possible” with the creation of the foundation and the extraordinary contributions of our friends and community. While our destination is certainly to accomplish the” impossible,” what’s striking to me is how amplified that concept becomes when an entire community is simultaneously contributing to that phenomena. Continue reading
A New Set of Eyes
It’s taken me a while to hunker down and write a new post. Life as we know it is changing, fast. Each time we adjust, change happens and we have to adjust again. We are living in a stark reality that there is a timeline on my son’s life… it isn’t assumed, it is a fact. And the fact is that it’s too short. Or at least that is how I’ve always thought, my brain never thinking there was another way to operate. We are supposed to live long, die old, getting to experience great things! Titus should be able play in his first soccer game, graduate, get married and be a dad! That is really living! Right?
This disease has stolen a lot from us in a short time. I find myself in tears over the “lasts” we’ve experienced that I didn’t even know were “lasts”. The last time I would hear my son proudly state that his name is “TITUS!”, the last time I would see him run to the park up ahead of me, the last time I would know for a fact that he saw me smile at him, the last time I would hear him say “love you”. As this change has happened, I’ve had to figure out how to relate to my son in a new way. His vision is almost gone. How do I help him still see? What does that even mean? He is going to go the rest of his days blind, so does that mean he has to miss out on the beauty this life offers?
And then I read this out of One Thousand Gifts, by Ann Voskamp. “The only place we need to see before we die is this place of seeing God, here and now.”
My son doesn’t have to score a goal to fully live. He doesn’t have to live to be 92 with grandkids and great grandkids to fully live. My son doesn’t have to be able to see everything around him to fully live. My son is fully living here and now and I know this because I see his spirit. I see his joy. Joy does not have a physical prerequisite to be able to experience it. We do not have to physically see God to know he’s here and working… We see him through our spirit.
This aha moment had given me new eyes too. No longer do I walk blindly through the day doing my momma thing only to have my eyes opened by some majestic landscape or some huge miraculous happening. My eyes are always open. And so are Titus’s. We breathe in the daily beauty, the smiles, cuddles, hugs, encouraging words from others, the times we play fetch with Sunny, the times when we go outside on a walk, when we simply lay still, and through all of that and more, I find reasons to be thankful. And out of thankfulness for all God has done and continues to do, I find joy.
We aren’t operating in bucket list mode anymore. I don’t think to myself, “someday when we can do this again, we’ll really be living”. That is a dark path for me to walk right now. No, instead I choose to see life through the eyes of joy in the here and now. Through the eyes of thankfulness in the here and now. We don’t ever completely grasp what God has done and is doing until we learn how to live in this way. How to see through new eyes.
So today, I saw my son’s spirit as he pursed his lips and spit, egging me on to do a giant raspberry on his tummy. And I will see his spirit in the way he calms as I hold him. And in the way he pounds his arms up and down to feel his world and how he still laughs at his brother because he just knows what Ely is doing. And when my son can no longer show any of this through his physical body, I will still pick him up and dance with him, I will still sing to him, pray with him, hold him. I know that he will still see God even through the limitations set out for him. Today, I choose thankfulness and joy, here and now and for that I see through new eyes.
Read more on Bekah’s blog, Can’t Steal my Joy.
Learn more about Batten disease.
Freelance Article by Helen Lok
Changing Our Dialogue about Batten Disease
Every day, families across America and around the world are facing an ongoing struggle. For each individual family, that struggle will be different. But what all families have in common is that everyday life inevitably brings its own set of challenges that all of us face. Some families face a more demanding struggle, and for these individuals, that struggle will come to play a huge role in defining who they are. But how we talk about that struggle and define it is also important. We talk about Batten Disease widely within the supportive community which has come together for solidarity, but it remains relatively unknown along with other NCLs (neuronal ceroid lipofuscinoses) in the mainstream community. Yet the more we talk about Batten Disease – as well as become more self-conscious about the language we use – the more we are able to reach out to others as well as spread awareness.
Parker was the honorary coach at the local hockey game! His community came out with signs and red streamers in support of Parker and his family.
Alone we can do so little, together we can do so much.