The Now with MaxLove Project

The Now with MaxLove Project

Ethan & Choco’s Book Club: Update and Next Steps

It has been over a year since we launched Ethan and Choco’s Book Club (ECBC) with the MaxLove Project, and we are excited to share some of the highlights of 2016 as well as our anticipated next steps.  After launching ECBC on social media in December 2015, we quickly formed an amazing core team to start planning and fundraising, and shortly afterwards we received the green light from the CHOC Foundation to move forward with building a program at CHOC. We created a website, a fundraising page, a Facebook page, an awesome logo (thanks to artist Mike Kungl), and merchandise and promotional materials (thanks to graphic designer Emily Frye). And since then, we’ve been working hard to raise money, collect books, coordinate plans for starting up in the hospital, and build awareness and make connections in Orange County. Last year we raised over $15,000 in funds and collected over 5000 new books. Of these 5,000 books, 1500 are hardcover books for our permanent Lending Library, and 3500 books comprise the start of our Gifting Library -- which is a separate collection of largely paperback books for patients in isolation who (per hospital protocol and infectious disease restrictions) cannot borrow books from the Lending Library. Ethan is proud that he completed Book Look #366 of his 2016 Book Look Challenge -- his self-imposed challenge that he announced on the first day of 2016 to make a video of a featured bookthat he wants donated for every day of the year. Daily Book Looks were posted and linked to ECBC’s Wish List on Amazon, and books of all types and for all ages came in the mail almost daily all year long -- making up the majority of our Lending Library to date. As part of our efforts to book-raise and build awareness, we set up our first booths at several events at Ethan’s elementary school, and then we enjoyed participating in larger events in the broader OC community, first at the Orange County Children’s Book Festival and then at a MaxLove holiday event at SOCO and the OC Mix in Costa Mesa. A few months ago, Ethan was inpatient for the first time in a while, which reminded him just how much books and reading are needed at the hospital. So he took advantage of being inpatient and spontaneously hosted a show on the CHOC radio station -- where he introduced himself and his mission to build a library at CHOC, read aloud a few favorite books, and gave away about 30 books to patients. These were the first ECBC books to be put in the hands of kids at CHOC, and Ethan said “it was so awesome to finally get to share my love of reading with other kids at CHOC”! Near the end of the year, a terrific article about Ethan and ECBC was published on the front page of the Orange County Register (http://www.ocregister.com/articles/children-736490-books-book.html) -- which was a definite highlight of the year and resulted in increased book donations and connections in the community. We finished the year with a Launch Party at the hospital, where we held storytime with five local wonderful children’s book authors, gave away 250 books to patients, and crafted books with MaxLove’s Therapeutic Arts program. It was awesome to end the year with so many books and so much reading happening in the lobby at CHOC!

Without doubt, the greatest highlight of the past year was the tremendous support that ECBC received from so many individual donors, kids in action who created their own booths to raise money or conducted book drives at their own schools, teachers who organized class projects that resulted inbook donations, and support from our first book publishers and charitable organizations. We’re so grateful for the support of our most significant donors -- Mary and Vaso Adzich, Jen and Jon Haft, Carol and Howard Hay, the Irvine Kiwanis Club, Kris Mauger/Burnham Insurance, PBS SoCal, Serge Melkizian/Quintus Investment Counsel, and the anonymous donors who generously gave at MaxLove Project’s 2016 Farm to Fork dinner. We’re also starting to create agrowing list of ECBC Thrive Partners who have committed to providing ongoing financial or book support. Our initial Thrive Partners include Sharon and Tod Paris, Barry Ackerman, KidsRead and Milk & Bookies (two terrific nonprofit organizations that give books to kids in need); the local Tustin bookstore Once Upon a Storybook (which collects books in the store daily and joins us at many community events); Saddleback Educational Publishing; Girl Scout Troop #3115; Coventry Court Health Center; and Tarbut ‘V Torah Community Day School (our first Orange County School to commit to book-raising on an annual basis for ECBC after holding a very successful book drive in December).  We are so honored to have received so much support in our first year!

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With a successful year behind us, we are excited for 2017!  We just received approval of a new volunteer position in the Child Life Department at CHOC -- called ECBC Bedside Reader. This means that we can now finally start the four to five month hospital volunteer approval process, with a goal to launch Phase 1 of ECBC, called Reading Aloud in Every Room, midway through 2017. By the end of 2017, we hope to launch Phase 2, “Books in Every Room”, which is our Lending Library on mobile book carts. We will continue with our efforts to collect new books, and Ethan plans to do a monthly Title Talk that shares on social media the titles of some of the books that we need for the library (which will continue to be linked to our Wish List on Amazon). In the coming months as we are preparing to start the first two phases of the program in the hospital, we hope to renew momentum for financial donations after focusing much of the past year on collecting books and resolving organizational matters. We will be establishing new financial goals and plan on reaching out to our past donors and other potential individuals and organizations to help us meet them.  We will also be working hard to continue to form enduring partnerships with individuals, schools, corporations, and both youth and adult charity groups, since the unique demands of a hospital-based library mean that we will have significant built-in loss of books (largely due to the gifting of books to all patients in isolation). Just to be able to read aloud to kids in isolation means gifting books to them!  Creating a sustainable library at CHOC will depend on significant ongoing support from the community, so we hope this year many more ECBC Thrive Partners will join our efforts to bring reading to Orange County’s hospitalized kids! (You can click on the link to the fundraising site below to make a one-time or recurring donation.)  We hope that 2017 will close with the first two phases of ECBC off the ground, patients enjoying books and reading on a daily basis, more partners and significantly more funds, and the road paved for us to start thinking about our long-term goal of building a stand-alone full-service library for CHOC patients.  Just recently, Ethan commented “how cool it is that ECBC started out as just an idea, then a dream...and now it’s actually happening.” We can’t wait to continue to make strides in 2017 to make books and reading a core part of the care that CHOC patients receive!

Sincerely, 

Ali Posner (ECBC Co-Founder), Ethan Posner (ECBC Co-Founder and Leukemia Warrior), and the ECBC Team. 

To learn more or support ECBC:

Transforming Childhood Cancer Care with Three Rs: Resource, Relate, and Research

On behalf of the MaxLove Project team and the thousands of childhood cancer families we served this past year, we are so deeply grateful for your continued support. 2016 was a banner year for us because of change-makers like you. This year we served more childhood cancer families, saw a greater improvement in their health and quality of life, and laid the groundwork for several new programs that will revolutionize quality of life and preventive care for childhood cancer families everywhere. We couldn’t be more honored to have earned your support this past year, and we couldn’t be more excited about what’s in store for 2017.

This past year—in addition to honing our cornerstone programs like the Fierce Foods Academy cooking classes, our individually tailored Fierce Foods dietitian consultation program, our SuperFamilies Support Network (which now consists of over 750 families fighting childhood cancers nationwide), the Broth Bank, Ethan & Choco’s Book Club hospital reading program, our BeSuper Thrive Kit initiative, and foundational BeSuper Action Plan—we started building three new initiatives that will integrate all of  these programs in a way that will help us serve even more families in a deeper way. We think of these new initiatives as our Three Rs: Resource, Relate, and Research.

Our primary goal at MaxLove Project is to resource families with knowledge, skills, and therapies that will help their child thrive in cancer treatment and beyond into survivorship. This includes holding therapeutic cooking classes and educational seminars on health topics like nutrition science, sleep, stress management, and physical therapy. So, to better resource families, we began work on building our own teaching kitchen and education space, what we’re calling the “Nutrition Kitchen.” Our goal is to build a space that will meet the unique educational needs of children with cancer and other life-limiting diseases as well as their families.

Second, we have found that all the resources we offer can become overwhelming unless we relate them to each other in a single, easy-to-use, family-friendly program. We’ve spent 2016 working hard with the best clinicians at CHOC Children’s Hospital to design a program that integrates all our resources into a twelve-week program that will profoundly improve the health and wellbeing of children and families fighting childhood cancers. We call it the “Ohana Project” because Ohana means family in Hawaiian culture, and this program not only treats the entire family but also connects childhood cancer families to each other. Our first Ohana Project families will begin the protocol in early 2017, and it will be rigorously studied in order to broaden and deepen its impact for years to come.

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Finally, we understand that evidence-based integrative medicine can’t exist without rigorous, scientific research. This year we began fundraising specifically for research in the field of nutrition and cancer. Recognizing that there are very few funds available for research in this area, our executive board decided to fill this gap. We are proud to report that our first major research funding was awarded to Dr. Adrienne Scheck at Barrow Neurological Institute. Dr. Scheck is at the forefront of researching the effects of therapeutic diets on brain cancer. Her work provides the evidence base that has the potential to change the face of integrative medicine in cancer care.

None of this would be possible without you. And you can help us do it again but bigger and better in 2017 by considering an end-of-the year, tax-deductible gift to the MaxLove Project. We are so honored to have earned your support and we are working at breakneck speed to make 2017 even more impactful. Thank you for standing with us and thousands of childhood cancer families as we continue to thrive against the odds!

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Introducing the Future of MaxLove Project: The Ohana Project

MaxLove Project was started out of a deep hope that all children fighting cancer will THRIVE in treatment and beyond. It began in the earliest months of Max’s cancer treatment when his parents saw the devastating effects of these conventional treatments on his and other children’s quality of life. Pain, extreme fatigue, cognitive decline, physical decline, nausea, weight loss, and many other smaller things are all part and parcel of the cancer treatments that parents trust will save their kids lives. And we now know that these effects of treatment can last a lifetime and eventually increase the risk for heart disease, cancer, stroke, and early death. 

We cancer families suffer through cancer treatment because it gives our kids the best chance for survival. But we started MaxLove Project because all children diagnosed with childhood cancers deserve to THRIVE. And so we’ve spent our energy focusing on the healing benefits of sleep, nutrition, physical activity, stress management, and social support (all aspects of our BE SUPER ACTION PLAN) as well as integrative therapies like acupuncture and massage. While we have constantly found new ways to deliver these to cancer families, we have had to deliver them in piecemeal fashion, through separate initiatives like our BE SUPER & THRIVE Kits, cooking classes, individual dietitian consultations, Broth Bank, therapeutic arts programming, and so on. This has limited the full power of each therapy or behavior change because—in truly integrative fashion—they are meant to work together. 

Therefore, last summer we began work on a game-changing program that brought our Director of Research, Justin Wilford, PhD, together with three of our Medical Advisory Board members, Ruth McCarty, LAc, (Clinical Director of Chinese Medicine and Acupuncture at CHOC Children’s), Tiffani Ghere, RD (Clinical Pediatric Dietitian, CHOC Mission) and Nadia Torres-Eaton, PsyD (Clinical Psychologist for the Hyundai Cancer Institute at CHOC Children’s). Our goal was to design a comprehensive integrative and lifestyle medicine program that will combine all of our separate programs into a targeted, personalized 3-month program that will profoundly improve the short- and long-term health of all children fighting cancer. We knew that in order to help parents achieve their dreams of thrivership for their children, we would need to engage both parents and children in tailored integrative therapies (like acupuncture and therapeutic massage), culinary training, small-group facilitated social support, and professional and personalized consultations for nutrition, physical therapy, and psycho-social wellness for parents and children in treatment and survivorship. The result of months of planning and researching is The Ohana Project.

Ohana, as Lilo & Stitch fans know, is a term that comes from Hawaiian culture and refers to family in all of its all of its senses, from blood-related to a broader communal bond. It’s a perfect term because our program will target the parent and child together in order to change the health dynamics of the entire family. Evidence shows that child and parent health are tied together, so we believe that the only way to impact childhood cancer patients’ long-term health and survival — the only way to truly change the odds today — is to change the health of the entire family. 

But we don’t stop there. A cornerstone of The Ohana Project is small, online social support groups of parents whose children have similar diagnoses and are in similar stages of treatment. In groups of five, parents will be connected to each other and a health professional experienced in integrative and lifestyle medicine. The goal of these groups is to not only deepen the social support parents can provide one another, but also to maximize the sharing of health information in a very specific and tailored way. This is truly Ohana—families coming together as a part of a larger family. 


The MaxLove Project team and our community, funding Phase One of The Ohana Project at the 2016 Farm to Fork dinner at Tanaka Farms.


And now we’re asking an even larger family—you, the community of childhood cancer advocates and supporters—to join us in Ohana. We will be enrolling our first cohorts locally in Orange County, CA early in 2017 and hope to extend to families across the U.S. by late 2017. But we can only expand as far as our larger Ohana helps us. To support this truly game-changing project, you can sign up for a monthly, recurring donation here or a one-time donation HERE. Thank you for being a part of our MaxLove Ohana!

MaxLove Project's Farm to Fork Dinners: Community dinners fighting childhood cancers.

Last year, MaxLove Project celebrated our first annual Farm to Fork Dinner at the beautiful Tanaka Farms in Southern California to honor the heroes in our community, celebrate thrivership, and to simply have some fun. Having our event near our office is awesome for everyone in the area – but our community stretches SO much further! This year we’re not just hosting another dinner at Tanaka Farms, we’re also inviting our entire community to join in by hosting their own Farm to Fork dinners across the country. We may not be able to celebrate together face-to-face, but we can celebrate as a community in spirit!

Big or small, your MaxLove Farm to Fork Dinner can be anything you want. Make dinner for a few friends, have a larger potluck or BBQ, or ask a local restaurant to host your event. Whatever works for you works for us! All we ask is that you host your dinner sometime during the week of October 9th through the 15th. We’ll be having an online auction to raise money for MaxLove Project and it will end at the close of our Farm to Fork Dinner on the evening of the 15th.

We'd love to have you and your community join the movement for culinary medicine and essential cancer/nutrition research!

Farm to Fork Dinner Checklist:

Your dinner will be whatever you want, but here's some guidance to MaxLove-ify your event (pick and choose what feels right for you).

  • Get started: Start a fundraising page and create a team. Invite your friends to participate by asking them to also start a fundraising page within your team (it's easy!). Set a goal to participate, like $25 or $50 (depending on your event type).

  • Consider honoring a local hero and please be sure to tell the world their story and why they inspire you.

  • We'll be sharing food inspiration leading up to the event to help with menu planning.

  • Try to use at least one locally-sourced ingredient (farm to fork), but if it’s an obstacle, forget it. Technically, all food comes from a farm.

  • Dance to the same tunes with us using this MaxLove playlist. [coming soon]

  • Post photos online using the hashtag #mlpfarmdinner to help digitally connect our community. Be sure to tag @maxloveproject!

undraising Prizes:

While we want you to have fun with your Farm to Fork dinner, we’d also deeply appreciate your help in raising funds for our esential thrivership programs. Here’s an incentive: If you raise $500, you’ll receive our Farm to Fork gift set of a tote bag and awesome dish towels. If you raise $1000, you’ll receive all of that plus a custom MaxLove Project cutting board. And if you raise $2000 and above, you’ll receive all of those items plus a Gold Apron in honor of our Gold Apron Society chefs. 

FUNDRAISING TIPS

  • Set a goal. Fundraising is always far more successful with a goal in mind. You can either vocally let people know your goal or put up a sign (or several or table tents or something) to let people know your goal.

  • Familiarize yourself with our fundraising platform (the site you're on now). After you set up your fundraising page, play around with the site to ensure you’re prepared to confidently engage your guests with the platform.

  • Don't forget to share your fundraising page on social media!

  • Make sure your guests sign up for your event by joining your team and starting their own fundraising pages themselves. Maybe give them a $50 goal to participate in the event? Or make it a competition between your guests and award something fun or cool to the winner. 

  • Share your inspiration. Why do you love MaxLove? Share your personal story or share a MaxLove video (like this one [HYPERLINK] to help people understand why they should donate.

  • Just ask. People will almost assuredly donate if you make the request with them in person. You don’t need to make the request individually, just make a vocal request to the group at least once (after you share your inspiration).

    Questions? Email us at info@maxloveproject.org. 

Zov's Family Table

The legendary Orange County restaurant group, Zov's Bistro, is teaming up with MaxLove Project to help bring hope and love to OC families facing adversities, such as childhood cancers. For each eligible catering order, Zov's will lovingly deliver a meal for four to a MaxLove SuperFamily. Learn more HERE. 

If you are a MaxLove Project SuperFamily, please apply HERE.

St. Baldrick's Foundation: MaxLove Project Hero Fund

SuperRiley knows the benefits of fueling her body with Fierce Foods.  We are proud to fund research through St. Baldrick's as to understand even more about childhood cancer and the human metabolism.

SuperRiley knows the benefits of fueling her body with Fierce Foods.  We are proud to fund research through St. Baldrick's as to understand even more about childhood cancer and the human metabolism.

Team MaxLove Project believes in evidence-based whole body wellness resources and therapies to fight pediatric cancers.  This is why we are proud to team up with St. Baldrick’s Foundation, an organization committed to funding research for cures for childhood cancer.  Partnering with MaxLove Project, the MaxLove Project Fund is a research fund dedicated to understanding the relationship between the human metabolism and childhood cancers.  We are proud to support such critical research, and are honored to know SuperKids and SuperFamilies who not only utilize MaxLove Project’s resources, but support the research that is the backbone to our mission.

As a MaxLove Project staff member, I have the honor of getting to know incredible families through the organization.  Anyone who knows me, knows that my very favorite days are when I get to play with SuperKids!  Whether families are visiting the office, or we're hosting an event, I love playing with SuperKids, SuperSibs, and chatting with SuperParents.  

Since I first began volunteering at MaxLove Project, I've had the privilege of knowing Riley, a sweet seven-year-old who is thriving against brain cancer.  I'm so excited, because this Friday, I get to join other fierce supporters of childhood cancer research, by shaving my head in honor of Riley’s fight against cancer and her survivorship today.  SuperMomma Jen is planning a shave event in honor of and her sweet Riley and her fight against Atypical Teratoid Rhabdoid Tumor.  The shave will be at Riley’s elementary school, where all of her SuperFriends can cheer her and her family on!  

This will be Jen's second time shaving in honor of Riley.  The first time Jen shaved, Melissa Joan Hart shaved her head!

This will be Jen's second time shaving in honor of Riley.  The first time Jen shaved, Melissa Joan Hart shaved her head!

I talked to SuperMomma Jen about why she is shaving her hair this Friday, and she shared that she is inspired to shave her own head, along with Riley’s dad and SuperSib Jameson, because of the bravery Riley has shown when she lost her own hair due to chemotherapy.  Jen explained that when Riley was 16 months old, she was diagnosed with brain cancer She underwent surgery to remove the tumor, had five rounds of high dose chemotherapy, a stem cell transplant and six weeks of daily radiation. This August will mark six years cancer free. Riley’s family will be celebrating how far she’s come by going bald in her honor.

Jen shares that she is supporting the MaxLove Project Hero Fund because they have seen, first hand, what nutritional therapies can do for SuperKids.  “We are grateful for the support we receive from the MaxLove Project regarding diet. Riley continues to thrive due to the changes we've made to her diet. It truly is amazing what the right foods can do for the human body,” shares Jen.  

Riley's SuperDad Ryan, Momma Jen, and brother Jameson will all be shaving their heads in honor of their SuperRiley!

Riley's SuperDad Ryan, Momma Jen, and brother Jameson will all be shaving their heads in honor of their SuperRiley!

As a MaxLove Project Team Member and supporter of St. Baldrick's Foundation, I am shaving my head for Riley, and every other SuperKid thriving against the odds.  By fundraising and shaving our hair, we're not just raising money for research, but investing in the lives of our children.  I have the privilege to meet families and children every day who benefit from MaxLove Project's resources.  Some of our families are at the beginning of their pediatric cancer journey, and some have entered survivorship and are searching for additional resources for their children.  MaxLove Project is honored to meet every family where they are, and provide research and much needed information about treatments and therapies.  I'm proud to increase funding for such crucial research and maximize funding for our kids.  So here's to going bald for Riley, Max, Katie, Joshy, Carter, Mikey, Ty, Terrance, Sabrina, McKenna, Sinatra, Diego, Nick, Lauren, Kailyn, and so many more SuperKids who I've had the honor of knowing or heard beautiful stories about.  

Abby adores SuperRiley and is so excited to go bald for the third time in her honor!

Abby adores SuperRiley and is so excited to go bald for the third time in her honor!


MaxLove Project is so proud of everything the Wade family is doing to support families battling pediatric cancer, and honored to that they are choosing to fundraise for the MaxLove Project Hero Fund.  I, along with the entire MaxLove Project Team, adore Riley.  Our days are always cheerier when we get to see Riley, her big smile, and her bright eyes.  Riley always has a story to share and loves to make others laugh.  She’s wise beyond her years, and loves to inspire other SuperKids.  We are honored to stand with SuperRiley and her family!

In addition to supporting the MaxLove Project Fund and St. Baldrick’s Foundation, Jen is also hoping to bring awareness to her own organization, called Gifts from Riley.  Gifts from Riley was started when Jen and her husband Ryan decided to make hospital stays more comfortable for families and their SuperKids.  

Are you local and interested in supporting SuperRiley at the St. Baldrick's Foundation shave?  Come on out!

Ladera Ranch Elementary School

Friday, May 13th (2016)

4:00pm-8:00pm

29551 Sienna Parkway, Ladera Ranch, CA