Lori Sames is the Executive Director of Hannah's Hope Fund, started by Lori and her husband Matt who live in Rexford to fund research toward a cure for a rare neurological disorder that affects their daughter, Hannah. In 2008, Hannah was diagnosed with Giant Axonal Neuropathy (GAN). When Hannah’s parents learned the diagnosis, they wanted to know what any parent in their situation would want to know... is there a cure? The answer was grim. There is no cure for GAN. There were no treatments. There were no clinical trials. There was no ongoing research. So Lori and Matt got to work. They started Hannah's Hope Fund, the only public charity in the world for GAN. Since they started, they have raised an astounding $3.2 million, including a $500,000 challenge grant from Doris Buffett and two Pepsi Challenge grants of $250,000 each. Matt Sames said those funds went for therapy development and research by an international scientific team as preparation for the clinical trials. The team has developed a gene replacement therapy they believe will save the central nervous system for patients afflicted with GAN. Once again, they have received a $450,000 challenge grant from Doris Buffett, founder of the Sunshine Lady Foundation and sister of billionaire investor Warren Buffett to pay for a clinical trial. However, it's an all or nothing grant. If they don't raise $450,000 by April 30, 2013 themselves, they don't receive the matching funds. To meet Buffett’s latest challenge, the Sames have launched Heroes for Hope. They are asking people to donate $50, send out a solicitation to 100 others and get three people to commit to do the same. To donate and to read more about Hannah's Hope Fund and Heroes for Hope click right here. Let's all help this family raise the funds for this much needed clinical trial to help save their daughter's life.
I am thrilled to have Lori, mom to three girls, take part in the My Mom Life series. Her extraordinary efforts to help raise funds to find a cure and develop treatments also happen alongside her day to day efforts to get kids on the bus, get dinner on the table, and spend time with her family.
What is your typical schedule like during the week? Hannah is an early riser. She is typically up at 6am. I get her settled with a drink, supplements and breakfast. I help get her dressed and do her hair and help her on to the bus. Then, I fix breakfast for Madison and Reagan. Some mornings they just have cereal, and I am thankful for their independence. Once my big girls are on the bus, I grab my laptop and usually head to a coffee shop or the library and work all day. I get home around 5:30. I shuttle kids to sports. Hannah goes to bed at 9pm and I get back on my computer until around 11pm.
What do you find tricky about your current set-up/schedule? I love what I do, I just wish it weren’t to save my daughter’s life. Leading Hannah’s Hope Fund is very rewarding and I am happy to have a flexible schedule so I am available to take Hannah on appointments. I often work in the evenings, after my girls have gone to sleep. Thankfully, my husband, Matt loves to cook! If preparing 5 dinners a week were to fall on my plate, TV dinners would be back in vogue.
Do you have time for yourself? Not a whole lot.
What do you do during that time? I like to work out. It helps keep me more balanced, all-around.
What advice would you give to other moms about how to balance work and life? When I am overwhelmed, our house is chaotic. Everyone feels tension. I find that if I make a list of the important things I need to follow-up on tomorrow that are still in my head and are making me anxious, I can then relax and officially put work behind me and relax. The tension level goes down and I can focus on my kids for the evening, until they go to bed.
Do you ever wonder how other women manage the juggle? Do you think people are open about it? Yes, I often wonder how others handle work and family. In general, I don’t think people openly complain or share how hard it is to keep all the balls in the air. I tend to wear my emotions on my sleeve. Unfortunately, if I am overwhelmed with life, it shows. I don’t have the energy for pretense. I wish I could internalize more, but it’s not my personality. My husband says it’s the Native American Indian in me. I admire those who look like they have it all together, but realize everyone has some sort of turmoil, and everyone deals with our hectic world differently.
What is one of your top must have products for the parenting part of your life? Coffee
What are some non-mom must haves? This may sound weird, but I need a good pair of shoes and boots, that are both fashionable and comfortable. Because I work from a home office, I wear casual clothes. If I have snazzy shoes, I feel like I’m ready for dress-down Friday like when I had a corporate job before kids. Sneakers are meant for the gym!
What is one thing you’ve realized/learned about motherhood that no one ever told you before you had kids? I clearly recall when I was about 8 years old, overhearing my father say to his friend that the worst thing in the world that could happened would be to lose a child. I was puzzled. At that age, the most catastrophic thing would be the loss of my mother or my father. I expected that to be his response. Once I had a child, I knew exactly what my father meant. I would lay down my life in an instant for my children.
If you had an extra hour in the day you would spend it...? Talking with scientists working on a treatment for Hannah’s disorder, Giant Axonal Neuropathy (GAN).
Do you find it hard or difficult at all to stay connected to friends/people in your life now that you have kids? Do you find there is any gap or gulf in between you and the friends/people in your life that don’t have kids? I am truly blessed to have all the friends that I have in my life. They provide me with strength and support to get through it all.
Is there anything you find yourself doing as a parent that you swore you would never do before you had kids? When my kids were little, I had a great deal of patience. I wish I had more patience and grace.
Did you ever expect your life would be as it is today? No! Until Hannah was diagnosed with GAN, we didn't realize there were still horrific childhood diseases out there that had NO treatment options. Receiving this diagnosis is analogous to being told you have cancer, except chemotherapy does not exist. I never dreamt I would essentially need to create a virtual biotech, find a team of scientists and need to raise nearly $5mn grassroots, in order to try to save my daughter's life. I did not know the structure of biomedical research is flawed and that breakthroughs in the labs at academic institutions are not being translated to humans. The system needs monumental overhaul. I try to carve out time to devote to policy changes. Thankfully, there are MD/PhD's like Dr. Emil Kakkis who have put their careers aside to devote their lives to getting the system changed in the hope that someday there will be therapeutics for the more than 6,000 rare disorders, impacting nearly 30 million Americans, the vast majority being children. Shamefully, there are only 250 rare disease that have effective therapies today.
Here are some great photos of Hannah being greeted by her mom after her first day of third grade...