World Down Syndrome Day 2016

In honor of World Down Syndrome Day, I'd like to share a very short clip from the interview I did with my sister Gabrielle for the film - she describes her idea of a perfect day and it should be of no surprise to the people that know, and love her, that her favorite subject is involved! She is one of the most badass chicks I know and the single greatest learning experience of my life... Enjoy!

The Interim...

Since wrapping principle photography we spent most of August applying for film grants to try and help fund the completion of the film. Film grants are extremely competitive but we are keeping our fingers crossed that the granting organizations see how important the r-word issue is and how the film will have universal appeal and help the r-word movement reach an even broader audience. We will keep you all posted on any developments that come our way! In the meantime, please tell your friends and family about the film and let them know they can make a tax-deductible donation through the 'DONATE' page on our website if they are interested in supporting the project: http://www.therwordfilm.com/fundraising/

September is all about updating and organizing! Now that we're settled back at home we are sending an exclusive update to all of our donors, as well as printing and sending out The R-Word t-shirts & tote bags that some donors will receive as a perk from our IndieGoGo campaign. Look out for those soon! We will also begin the process of organizing the footage we shot during the 3-month production to see what we've got and if there's anything we still need to film. Now the fun really begins!

The Crew (Danny Egan, Amanda Lukoff, Zac Halberd and Spencer Clinton Parker)

The Crew (Danny Egan, Amanda Lukoff, Zac Halberd and Spencer Clinton Parker)

Filming - Los Angeles

We headed out to the west coast in late July to wrap principle photography in Los Angeles, where we got the chance to sit-down and interview Lauren Potter and Grant Barrett. Lauren is an actress and activist, best known for her work on the TV show Glee, and Grant is a lexicographer and language expert specializing in slang & new words. We've been California dreaming ever since we met these two amazing individuals and enjoyed our time together before, during, and after filming with them - their generosity of spirit and conversation stayed with us long after we headed home, energizing us for the next part of our filmmaking journey!
(For more information on Lauren Potter and Grant Barrett, please visit our 'CAST' page)

Amanda Lukoff and Lauren Potter

Amanda Lukoff and Lauren Potter

Grant Barrett

Grant Barrett

Filming - Delaware

We got lucky and were able to stay with my parents in Delaware while filming in New Jersey and Pennsylvania, and stayed an additional five days to film with my sister Gabrielle and the rest of my family during the first week of July. As you may know, my older sister Gabrielle has Down syndrome and was the inspiration for this documentary. Now it was my turn to be on the other side of the camera - we filmed all over Wilmington and had a blast reminiscing over our favorite childhood memories and spending some quality sister-time together! We also had the privilege of interviewing three more illustrious thought leaders, including world-renowned self-advocate Loretta Claiborne, n-word expert Jabari Asim, and best-selling author Rachel Simon. We were blown away by their personal perspectives and the powerful and moving message they each imparted - a day of filming we will never forget!
(For more information on Loretta Claiborne, Jabari Asim and Rachel Simon, please visit our 'CAST' page)

Danny Egan, Amanda Lukoff, Gabrielle Lukoff and Zac Halberd

Danny Egan, Amanda Lukoff, Gabrielle Lukoff and Zac Halberd

Amanda and Gabrielle Lukoff

Amanda and Gabrielle Lukoff

Amanda Lukoff and Loretta Claiborne

Amanda Lukoff and Loretta Claiborne

Jabari Asim

Jabari Asim

Amanda Lukoff and Rachel Simon

Amanda Lukoff and Rachel Simon

Jessica, Samantha, Amanda and Gabrielle Lukoff

Jessica, Samantha, Amanda and Gabrielle Lukoff

Filming - New Jersey

At the end of June we traveled to New Jersey and Pennsylvania to film with Jason Newbury and Jenni Newbury Ross, another sibling set - Jason has Down syndrome and inspired his sister Jenni to co-found PALS Programs, a non-profit organization. We filmed with Jason, Jenni and their family at their childhood home, at work with Jason, and at Camp PALS Philadelphia, where we were lucky enough to capture so many fun moments and witness the incredible impact that Jason, Jenni and PALS are having on so many lives. The Newbury's were consummate hosts and treated us like part of the PALS family - we can't wait until our daughter Nya is old enough to volunteer and experience what makes this organization so special!
(For more information on Jason Newbury and Jenni Newbury Ross, please visit our 'CAST' page)

Camp PALS

Camp PALS

Jason Newbury and Jenni Newbury Ross

Jason Newbury and Jenni Newbury Ross

Alana Hibbs and Jason Newbury

Alana Hibbs and Jason Newbury

Robyn Newbury, Jenni Newbury Ross, Mark Newbury, Amanda Lukoff, Steve Ross and Jason Newbury

Robyn Newbury, Jenni Newbury Ross, Mark Newbury, Amanda Lukoff, Steve Ross and Jason Newbury

Filming - New York City

We started off the summer with a visit to NYC to film man-on-the-street interviews and sit-down with two influential thought leaders in the r-word and disabilities rights movement. We ran around Brooklyn and Manhattan for two days asking people their thoughts on the r-word - how often do they hear it, in what situation, in what context, and do they personally use the r-word? We conducted over 50 street interviews, met people from all over and had very honest conversations with complete strangers. Our final street interviews were held in the center of Times Square, which seemed appropriate after two full days of very real and exciting filming! We wrapped up our NYC visit interviewing Hannah Jacobs and Dr. Gary Siperstein - Hannah founded Family Member, an organization that works at stopping disability hate speech and promoting positive portrayals of individuals with intellectual disabilities in the media, and Gary, who's had a long and illustrious career in academia, is the author of the study Sticks, stones, and stigma: a study of students’ use of the derogatory term “retard.” These interviews generated so much insight into the r-word issue and debate and left us feeling extremely appreciative of their time, experience and energy.
(For more information on Hannah Jacobs and Dr. Gary Siperstein, please visit our 'CAST' page)

Spencer Clinton Parker, Zoe Rose, Amanda Lukoff, Danny Egan and Zac Halberd

Spencer Clinton Parker, Zoe Rose, Amanda Lukoff, Danny Egan and Zac Halberd

Amanda Lukoff and Hannah Jacobs

Amanda Lukoff and Hannah Jacobs

Amanda Lukoff and Dr. Gary Siperstein

Amanda Lukoff and Dr. Gary Siperstein

Filming - Annapolis

After filming in DC we headed to the Annapolis, Maryland area to meet Rosa and Nick Marcellino, another sibling set. Rosa has Down syndrome and inspired her brother Nick to testify before the Maryland legislature about removing the r-word from state laws - because of her entire family's efforts, the federal law that ultimately passed was named Rosa's Law, after Rosa. We filmed with the Marcellino family for four days and captured Rosa at school, Maddie's graduation party and quality time at the Marcellino home - it was evident that Rosa is the center of this very loving family whose actions are now an important part of history!
(For more information about Rosa, Nick and the Marcellino family, please visit our 'CAST' page)

Rosa Marcellino

Rosa Marcellino

Rosa and Nick Marcellino

Rosa and Nick Marcellino

Nina Marcellino

Nina Marcellino

Amanda Lukoff, Paul, Maddie, Nick, Gigi, Rosa and Nina Marcellino

Amanda Lukoff, Paul, Maddie, Nick, Gigi, Rosa and Nina Marcellino

Filming - Washington, DC

After the Memorial Day holiday, we had an action-packed day of filming sit-down interviews at Special Olympics Headquarters in Washington, DC with some of the most important thought leaders in the r-word movement. We had the honor of sitting down with Special Olympics Chairman Tim Shriver, self-advocates Jill Eglé, John Franklin Stephens and David Egan, and Dr. Julia Wilkins and Brandy Johanson Sebera, who co-authored the study The Uses and Implications of the Term "Retarded" on YouTube. The conversations we had with these exceptional individuals were compelling, insightful, thought-provoking and a lot of fun (we think Frank and David deserve their own talk show) - a truly unforgettable experience!
(For more information about Tim Shriver, Jill Eglé, John Franklin Stephens, David Egan, Dr. Julia Wilkins and Brandy Johanson Sebera, please visit our 'CAST' page)

Tim Shriver

Tim Shriver

Jill Eglé

Jill Eglé

John Franklin Stephens and David Egan

John Franklin Stephens and David Egan

Dr. Julia Wilkins, Amanda Lukoff and Brandy Johanson Sebera

Dr. Julia Wilkins, Amanda Lukoff and Brandy Johanson Sebera

Filming - Nashville

We left Chicago and traveled on to Nashville to film with the Long brothers, another sibling set - Cayden has Cerebral Palsy and inspired his brother Conner to come up with the idea to compete in triathlons as a way to spend time together. We spent four fun-filled days filming with the sweet and rambunctious Long boys and their mother Jenny, and got a glimpse into their daily routine. We had the opportunity to film Cayden and Conner practice for an upcoming race, as well as film a visit to the wheelchair-friendly playground Conner pushed to have built in their town so Cayden could have a fun place to roll around and play. We'll never forget the sound of Cayden's infectious laughter while he was on the swing that day - pure unadulterated joy! After spending time with such a dynamic and inspiring family, we headed home energized for the filming that lay ahead.
(For more information on Cayden & Conner Long, please visit our 'CAST' page)

Zac Halberd, Conner Long and Amanda Lukoff

Zac Halberd, Conner Long and Amanda Lukoff

Conner Long

Conner Long

Cayden Long                                                                                                                                                                      (Photo Credit - Brandon Hirsch)

Cayden Long                                                                                                                                                                      (Photo Credit - Brandon Hirsch)

Conner Long, Danny Egan, Amanda Lukoff, Jenny Long, Cayden Long and Cooper Long

Conner Long, Danny Egan, Amanda Lukoff, Jenny Long, Cayden Long and Cooper Long


Filming - Chicago

Production began on May 7th when we traveled to Chicago to film with Olivia and Soeren Palumbo and their family. Olivia and Soeren are one of our sibling sets - Olivia has an intellectual disability and inspired Soeren to co-found the Spread the Word to End the Word campaign. We were welcomed with open arms into their home and lives and soon discovered what a tight-knit family they are (definitely one of the closest families we've ever met). We spent four days filming with the Palumbo's in their home, at the bowling alley, at Olivia's job site and life skills class, and even played a round of Garage Band in their basement after filming one evening! We were well-fed (thank you Kristen), had plenty of high-fives (thank you Olivia), and left feeling like we were part of the family. We also had the honor of sitting down with Soeren and co-founder Timbo Shriver for an interview about their experience with the Spread the Word to End the Word campaign - it was one of the most engaging and memorable interviews, a true privilege!
(For more information on Soeren & Olivia Palumbo and Timbo Shriver, please visit our 'CAST' page)

Olivia and Soeren Palumbo

Olivia and Soeren Palumbo

Soeren Palumbo and Timbo Shriver

Soeren Palumbo and Timbo Shriver

Palumbo Family dinner

Palumbo Family dinner

Zac Halberd and Olivia Palumbo

Zac Halberd and Olivia Palumbo

Drew Palumbo, Kristen Palumbo, Olivia Palumbo, Jenna Palumbo, Sofie Palumbo, Rachael Palumbo, Amanda Lukoff, Soeren Palumbo, Danny Egan, and Timbo Shriver

Drew Palumbo, Kristen Palumbo, Olivia Palumbo, Jenna Palumbo, Sofie Palumbo, Rachael Palumbo, Amanda Lukoff, Soeren Palumbo, Danny Egan, and Timbo Shriver



And so it begins...

Six years after coming up with the idea for The R-Word documentary film, and after years of research, one year of development, two months of pre-production, two months of fundraising and countless hours of conversation, we commenced production on May 7th, 2015. This film is a passion project in every sense of the word - a project that has been in my mind since I was a young girl.

To say that this journey and the making of this film continues to be a surreal and humbling experience would be an understatement. I do not take for granted all of the people who have helped bring this film project to fruition. I thank the incredible individuals participating in the film who have shared their words, stories and lives with us. I thank all 400+ donors who's generous contributions have made this production a reality. I thank Zac, our cinematographer, and Spencer, our producer friend, who's talent, time and integrity created such a delightful and fun production experience. I thank our family and friends for their love and support, and specifically our parents for taking care of Nya when we were filming. Last but not least, I thank my partner-in-life and in this project, my husband Danny (who's also producing and editing the film) - there is no way that this film would be happening if it weren't for your unconditional love, support and belief that I could do it. 

I look forward to keeping momentum going, completing this labor of love and making all of you proud. 

R-Word = RESPECT

Much love,
Amanda