Giving Back to Graham’s Research Fund

Thank You

I am beyond grateful to share that Brew and ‘Cue was a HUGE success. We had 140 guests attend, which helped us raise so much awareness for mitochondrial diseases. Not only did we enjoy such amazing fellowship with new and old friends, we also raised a lot of money for our research fund! In the final count, we raised a little over $12,000 for the Graham Collins Research Fund, which is incredible! God is so good! Words truly cannot express how grateful we are for everyone who continues to help us honor Graham. But I will do my best and sincerely thank each and everyone. You mean so much to us.

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Since the event, I have been working with the United Mitochondrial Disease Foundation (UMDF) to find a program that we can support. I even managed to get in touch with a doctor leading one of the research programs to hear from her about their goals, plan, and what she needs most. She is leading a study to help make the diagnosis of mitochondrial disorders easier. Because mitochondrial diseases affect multiple organ systems and produce many different symptoms, they are so difficult to diagnose. This adds to the challenge of diagnosing, as well as treating mitochondrial disorders, and also slows down the clinical research needed to discover new therapies. While genetic testing is increasingly used for diagnosis, it is very expensive, which we know all too well. So this research team hopes to use cells from a simple blood draw in conditions that stress mitochondria to test how well mitochondria are functioning. If successful, she hopes to provide a simple and relatively quick test to guide the diagnosis and medical decision process, AND it would be less expensive than genetic testing. Wouldn’t that be incredible?

This summer the UMDF will announce a few more research programs they are supporting at their annual conference in June. Brandon and I hope to attend the conference which would allow us to meet with other families, doctors, and the UMDF team and learn more about the different research opportunities. Since there are many possibilities to help with the research of mitochondrial disorders, we are going turn this over to God. In times like these, it’s best to pray about what weighs on our hearts and trust God to lead us. We know He will lead us to the best study that will have the greatest impact on so many other families. We will keep you posted on how things turn out. In the meantime, we’ll keep sharing Graham’s story with others, snuggling with our miracle baby Carter, and living a life that will make our Graham proud.

Brew & ‘Cue

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Why not start the new year off by supporting a great cause and enjoying some tasty barbecue and brews at the same time? Tickets are now on sale for our Brew & ‘Cue event and can be purchased here.

Besides encouraging you to buy a ticket to our event, I also want to take a moment to thank everyone who continues to support our #growgrahamgrow mission. I am very excited to announce we are making progress in securing items for our silent auction. Right now we have:

An assortment of gift certificates for tasty treats like cookies, pies, and jams
Various wine and cocktail baskets
Gorgeous art pieces from local artists
Beautiful lamps from Circa Lighting
Family photography sessions
Beauty products from Beauty Counter and Rodan and Fields, even a gift certificate for an elite medical spa – Sculpted Contours Luxury Medical Aesthetics
Hawks tickets and signed sports memorabilia
Cooler and other outdoor gear
Travel, including a cabin rental in Bryson City

Follow @brewandcue4mito for more information about items as we secure additional donations.

We are still in need of items, so if there is anything you would like to donate, you can contact me at lauren.tristani@gmail.com. And if you receive an email or DM asking for a donation, please know this is never easy to ask for help, but until there is no one suffering from mitochondrial diseases like Alpers, we must do what we can to make a difference.

We are so grateful for everyone who keeps getting in our boat to help us honor Graham. Sharing his story and raising money for mitochondrial disease research is important to us. It leaves us with hope after the loss of Graham. We hope to see you, your neighbor, your brother, and all your friends at our event on February 10 at Monday Night Garage.

Brew & ‘Cue for Mito

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We are so excited to announce our next fundraiser for the United Mitochondrial Disease Foundation and our Graham Collins Research Fund – Brew & ‘Cue for Mito. This event will take place February 10, 2019 from 1:00 – 3:00 at Monday Night Garage. Tickets will include a variety of beers from Monday Night Brewing, barbecue from Southern Fried Hospitality, and access to an amazing raffle and silent auction. All proceeds will help benefit our mission to further research to help doctors identify, treat, and ultimately prevent diseases like Alpers-Huttenlocher Syndrome and other mitochondrial diseases. We hope to see you there!

Tickets will be available January 1, but in the meantime, we are accepting donations for our raffle and silent auction. Similar to last year’s Mimosas for Mito, we hope to auction off gift certificates for family photography sessions, golf, restaurants, salon services, shopping, tickets to sporting events, vacation rentals, and other items like beauty products, clothing, jewelry, sports memorabilia, or anything else that you think will help us raise money. Please contact me at lauren.tristani@gmail.com if you have a donation or would like to volunteer in another capacity. We could never do this alone and are so grateful for all the love and support we continue to receive.

We are so excited to put on another great event that not only honors Graham, but also allows us to socialize with new and old friends and raise money to help in the research to one day prevent terrible diseases like Alpers’. By working together, raising awareness, and fundraising to help with diagnosis and treatment, we can make a difference. We can’t wait to see you in February!

The Truth Behind a Loss

Since Graham’s passing, I feel different. Things that once mattered to me or I was passionate about, just don’t seem to bring the same excitement. The path I envisioned for myself doesn’t feel right anymore. And I’m sure I am not alone. After any loss, whether it’s a parent, grandparent, friend, or child, you are forever different. You are a part of a club you never envisioned and it can impact you in big or small ways. This “loss” could even be an idea – an idea of a pregnancy or an idea of a future child you desperately want; a loss might not be death, but rather a breakup in a relationship. Those who experience a breakup or divorce lose the idea of a future with their spouse or significant other. I feel like we all can relate to this in some shape or form and understand that when something life changing happens, no matter how big or small, it changes you.

A loss, no matter what it is, is tough. Adapting and changing after the loss, is even harder. Some days, when the struggle is more than I can bear, I must remind myself I am not alone. “Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you. He will never leave you nor forsake you.” (Deuteronomy 31:6) He is with me every step of the way. Even with His strength and the comfort knowing God is with me, does not change the reality that transformation and attempt at healing after a loss is a great challenge. For me, this process is a struggle between who I once was, and this new person I’m trying to understand. After losing a child, it’s a struggle to move forward with life while still remembering Graham and keeping his spirit with me. I notice this most in what excites me now. Not everything is different. Brandon and I love quite date nights at home, and I look forward to chance to catch up with friends over dinner. I still find joy in encouraging my students and trying to get them excited about learning. And, yes, one of the highlights of each week is getting a Chai Tea at the Starbucks during my Target run. Those things are still there, but there are now new things that also bring excitement and in my opinion, bring a greater purpose to my life more than before. For example, educating strangers about rare diseases and the importance of genetic testing brings such joy to me. Sharing a story about how medical research is improving and impacting families like mine is thrilling. Connecting with another mother who understands loss, frustration, pain, and hope is rewarding. As much as I want to hold on to my old interests, my old self, I am without a doubt a new person. Brandon’s a new person. Our family is forever different and we are okay with that.

One of the things I’m realizing is the new me is often talking about rare diseases. As uncomfortable as it may be, it’s a calling I cannot ignore. And thankfully, there are plenty of ways to educate others about rare diseases, including something happening in February. Last year we participated in a Jeans 4 Genes Day on World Rare Disease Day & I’m very excited to announce we plan to do it again! MitoAction, an organization dedicated to improving quality of life for those who are affected by mitochondrial disease, is partnering up with Global Genes, one of the leading rare disease patient advocacy organizations in the world. On February 28, 2018 we ask that you too participate in a Jeans 4 Genes Day. Ask co-workers, teachers, students, friends, family, etc. to donate $5 to wear jeans in honor of World Rare Disease Day. For more information about organizing an event please visit http://www.mitoaction.org/jeans-4-genes. It may sound silly to wear jeans and post on social media about the day, but it’s so much more than that. I truly believe when we talk about rare genetic diseases, we are educating the world about genetic testing and prevention, which makes a difference!

I’ll get off my soap box now. But as you can see, this is what matters to me now. This is what happens after a loss. You are different. You aren’t afraid to use your voice to show the world what truly matters now. As I try and adapt to this new path, I continue to trust in the Lord. “Trust in the Lord with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and he will show you the right way.” (Proverbs 3:5-6) Once again, I can’t say it enough, God is good. He provides hope and strength when we need it most. He provides us with direction when we feel lost and guides us through these changes we face after a loss.

Mimosas for Mito

I have teamed up with United Mitochondrial Disease Foundation (UMDF) and organized an event to raise awareness and funding for mitochondrial diseases – Mimosas for Mito. As I learn more about mitochondrial disease, I am understanding mitochondrial disease isn’t as “rare” as I once thought. Instead people are simply unfamiliar with it. The type of mitochondrial disorder Graham had – Alpers’ disease is rare, but approximately 1 in 2,500-5,000, adults, teens and children are affected by mitochondrial disease, making it more common than childhood cancers. Yet, many people know nothing about mitochondrial diseases! I hope to change this. Mimosas for Mito will not only raise money to help UMDF’s mission to promote research & education for the diagnosis, treatment, and cure for mitochondrial disorders like the one which impacted our family’s life, it will also get people talking about mitochondrial disease! With greater awareness, there will be more funding for research, and ultimately there will be a cure. So come out to The Ivy Buckhead on Sunday, August 6th, have a mimosa with us, and support this wonderful cause!

You can find more information, and even more important, you can purchase tickets here: https://www.xorbia.com/events/mimosasformito/2017

Since this is our first event, spread the word and invite as many people as you can. We are also looking for items for the silent auction. If you have any items that you would like to donate, please email me at lauren.tristani@gmail.com. Together, we can make this an annual tradition to eat, drink, and raise money for a great cause!!