Hi Everyone,

It’s been an event filled month at Always in Hope. I’ve met a lot of wonderful people, shot some insightful interviews and made a number of new friends in the rare community.

The emotional support and encouragement this project has received is heartwarming. I truly believe it is a project that will benefit a great many people.

Today is the last day of the kickstarter campaign and unfortunately we did not meet our funding goal. We had close to $20,000 pledged to the project and I want to thank each and every one of you who backed the project over the course of the campaign. Your generosity is very much appreciated. I truly can’t thank you enough and I’ll be giving all of you a big hug next time I see you. Kickstarter is an “all or nothing” model of crowdfunding so that being the case, if you are one of those who made a pledge, your credit card will not be charged by kickstarter.

So what does that mean?

I see it merely as a bump in the road for the project. For whatever reason crowdfunding is, at this time, not the way to move the project forward.

I have learned quite a lot over the past month so I have taken this newfound knowledge and have adjusted course so we can continue our journey to make this film.

In closing this post, I’d like to encourage everyone to sign up for our newsletter for all the project updates. There are some exciting things happening and while it’s too soon to share them with the world, my hope is you will continue engaging with the project as we continue down the road to success. I will also of course update the website and post on social media as announcements are made so please look for that as well.

If anyone has any questions for me please don’t hesitate to reach out and ask.

Thank you again to everyone who backed the project and have participated in the project to date. I look forward to sharing them with you.

Always in Hope,

Rudy Poe

Meet our New Associate Producer Shira "Sick Chick" Strongin!

Hi All,

Rudy here... I'm very pleased to announce that Shira Strongin has officially joined the AIways in Hope team and she'd like to tell you in her own words:

Hi my name is Shira aka “Sick Chick”. I’m an Orange County girl with an urban attitude. I live with my parents and my two rescue shepherds. My passions include binging Netlflix, lobbying the House and Senate, hanging out with friends, reading, writing, and all things social justice.

Novelist John Green wrote, “The way I figure it, everyone gets a miracle.” Depending how you define the word miracle I think getting sick was mine. No, I’m not happy I got sick, but I wouldn’t be the person I am today if I hadn’t. Because of having a rare disease I know how strong I am. I’ve realized my passion for advocacy. I’ve realized how to appreciate the little things like being able to stand up, or breathe, or even get older. I can laugh in basically any situation now. I’ve learned not let something as uncontrollable as pain get in the way of living.

As one of my favorite poets Sylvia Plath once said, “…everything in life is writeable about if you have the outgoing guts to do it, and the imagination to improvise…” That quote inspired me to start blogging under the pen name Sick Chick. (As the name implies I seem to have won the genetic lottery in acquiring rare diseases.) To me, there is nothing more beautiful and powerful than the written word. It has provided me the ability to give a voice to many issues and experiences that shouldn’t be normal in a teen’s life. My blog eventually turned into The Sick Chick Network. Through my website and Facebook support group, The Sick Chick Network combines my passions for ableism and feminist advocacy, as well as writing. I’ve gotten to be a part of a wonderful community through that and support young women who, like me, refuse to let their disease define them. I invite you all to visit the website www.thesickchicks.com, we are a powerful group of young women wanting to make a change.

Speaking of making a change, I’m thrilled to be joining the Always in Hope project as an Associate Producer. I believe media is such a force in awareness. And while The Beatles might sing, “all you need is love”, I believe all you need is hope especially while living with a rare disease. I don’t know how much I believe in fate, but if our faulty stars (or for some of us our faulty genetics) determine what happens to us, we still have the power to choose how we handle it and what we do with it. I’m taking a stand and speaking up. I’m hoping you’ll join me.

My 17th birthday is coming up (March 29th) and my birthday wish this year is for donations to the Always in Hope Kickstarter to support continual hope. Not just for me, but for all of us in the rare disease community. No amount is too small, we truly appreciate everything.

I’d like to end with one last quote with a word on advocacy. This is from one of my favorite doctors (and gosh knows I have many), Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” Without your support this project can’t happen. We need everyone to stand together for the rare disease community, because despite all of the challenges we face we’re not giving up. We’re Always in Hope.

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Everything You Ever Wanted to Know About Kickstarter...

Hi All,

We're just getting into our kickstarter campaign and I've been getting some kickstarter related questions that I think would be helpful to answer for everyone. 

A bit about Kickstarter...

Kickstarter the world's most established crowdfunding platform. They have funded 102,000+ projects and have generated over $2.2 Billion worth of revenue for filmmakers, musicians and entrepreneurs since 2009. 

30 days to Reach our Funding Goal

It's important that we get off to a healthy start as every day counts. We we would love to have you show your support as soon as possible as early support is crucial so that other users who are new to the project trust us and support us.


If this is the first time you will be using this platform, this is how it works: we need to get as many people as possible on the campaign, so we can reach the goal, get funded, and get Always in Hope off the ground. After the campaign, we'll receive the money and get to work delivering everyone's rewards and continuing on with our endeavor. There is no risk because, if we do not reach the full goal, you will be not be charged. It' ssuper easy and you can join us by clicking here!

Did you say rewards?

Yes! Participants receive rewards based their level of involvement. We've come up with a bunch of fun Always in Hope rewards including prerelease downloads of the project, seeds of hope, good luck coins, an Always in Hope book and even a credit on the film! You can check them all out on the campaign page. 

Also, if you could share the project on your social media channels, that would be great! It only takes one click :) You can find Always in Hope on facebook, Twitter, and others by searching for alwaysinhope. 

Thanks in advance for your support, it means a lot to me and everyone involved with the project.  To make this happen, click here now!

Always in Hope,


FAQ –We are happy to help!

Do I have to sign up for Kickstarter to join you there?
Yes, you need to create an account on Kickstarter, or use an existing one if you have used it before. It only takes seconds, and you can sign up with Facebook. More info

How do I contribute to your campaign?
Click on the Back this Project button on the campaign page
to provide your contribution details and select your reward. 

What kind of payment method can I use to make a contribution?
You can use a debit or credit card associated with Visa, Discover, MasterCard, or American Express. If using a pre-paid credit card, please make sure that the card has a value of at least $1 more than your pledge amount. More info

Our Kickstarter Campaign is Up and Running!

A big thank you to everyone who has accompanied us on our journey thus far and helped us get to this very hopeful day! I'm thrilled with the response thus far and look forward to sharing with you all the updates over the coming days, weeks and months. Don't forget to #sharethehope. The link to the Always in Hope #kickstarter campaign is short and sweet: http://kck.st/1RhODe7

Always in Hope,


A letter to my Friends, Family and Colleagues,

I would like to share a story with you.

I’ve been working on a project for several months now and it’s time to share it with the world. It’s entitled, Always in Hope.

The story is about life with rare disease. While the diseases themselves are considered rare, one in ten Americans has or will develop a rare disease, and then encounter a 95% likelihood of zero treatment. That equates to over 30 million people in the US alone; more than cancer and AIDS combined. Approximately half of them are children and 30% of these kids won’t live to see their 5th birthday.  Always in Hope is an unprecedented account of the “rare” experience as told by the patients, parents, caregivers and advocates themselves.

While I’ve been making documentaries for nearly 30 years now, this one represents a first for me. That being the case, it’s a bit scary to dive into such a venture...but hey, no guts, no glory right?

The thing that gives me the courage to do so is I really believe that this project is meant to be. I believe it needs to be.

The single most difficult part of making documentary projects is funding them. In the past, you had to “ask permission” from one of a handful of distributors… the Discovery Channels, History Channels, public television stations, or other TV outlets of the world. Chances were slim to none that you would get a green light and actually have the opportunity to make your project. Over the years my colleagues and I have developed and pitched hundreds of projects. And thankfully, we’ve succeeded in making a number of them.

And now, it’s time to pitch this project. But rather than pitch it to some TV exec somewhere whose decision making is based exclusively on ratings, for the first time ever, I’m pitching Always in Hope to the audience directly. That is the scary part. Why? Because the opinion of this audience; the one that will be interested in, and benefit from, this project, is far more important that the opinion of any TV exec. 

What makes this possible, is the advent of something called “crowdfunding”. While you may or may not know this term, it’s essentially the process by which a project gets made through the efforts of a community of supporters. This group of people participate in the making of the project through financial pledges and/or community support, through words of encouragement and generating awareness for the project.

So why me and why this subject? 

Three years ago I had the honor and privilege of making Here. Us. Now., a film about a parent’s fight to save the lives of their twin daughters who had been diagnosed with a debilitating and deadly rare disease. The film opened my eyes to this “not-so-rare” aspect of the human condition.  Now, given my experience with both documentaries and this particular subject matter, it seems to me that Always in Hope has chosen me as much as I have chosen the project. So my hope is that my energy and desire to produce this film mixed together with a lot of good people’s support, is the recipe to make an extraordinary piece of work that can help a great many people.  

Always in Hope is an ambitious project.  It requires the resources to take a crew around the country to engage with the rare community and meet patients and caregivers, doctors and researchers, inventors and entrepreneurs, policy-makers and advocates. Quite frankly, a film of this scale about this subject has never been made. Which is exactly why we need to make it.

The key to the project’s success at this point is quite simply, awareness.  Based on historical data for projects funded in this way, we need roughly 3,600 backers at a variety of levels ranging from $10 - $1000 each with the vast majority being $100 or less.  

Now I don’t even know 3,600 people so the way I see this working is based on everyone’s “circle of influence”. You have one. I have one. Everyone has one. For some it may be only a handful of people. For others, it could be thousands. If you’re a parent, certainly your influence extends to your family, your children, your friends, your church or other groups with whom you engage. If you’re a business professional, your circle is probably a bit larger as it also extends to your colleagues, customers, shareholders, etc. If you’re in the public light as an entertainer, politician, artist or speaker, your circle of influence is likely even larger and includes your entire fan-base, from local to national and perhaps even international.

So if I may respectfully ask a favor, I’d very much appreciate it if you would take a few minutes and look at the rest of the project’s website so you can better understand the story and how it's going to get made. Then, if it strikes a chord with you, I’d also like to ask that you share it with those who are in your circle of influence. And of course, I’d love it if you would show your support by also backing the project on Kickstarter.com beginning on March 14th. You can do so for as little as $10 or as much as $10,000. In addition to knowing that you’re playing an important role in the making of Always in Hope, there are also some "friends in hope" perks for doing so as listed on our Kickstarter.com campaign page.

We are just getting started with social media as it’s taken this long to get all the other materials produced for the campaign. That being the case, there is not much out there yet but from this point forward, we will be publishing daily updates and interesting info as we want everyone to be a part of the journey. So if you would be so kind, please like, follow, tweet, pin or whatever you would like to do as we grow our Always in Hope community. You will find the project on facebook, instagram, pinterest, twitter and youtube. Simply search for alwaysinhope.

Thank you so very much for your time to read this. If you have any questions or would like to see a preview of the Kickstarter campaign before the March 14th launch date, please email me and I will answer and/or give you the link.

In closing, I’d like to share with you an interesting quote that I heard the other day. I think it’s an omen because Always in Hope fulfills the quote’s criteria.

Always in Hope,

Rudy Poe


Lights. I'm on camera. Action!

Hi Everyone, Rudy Poe here. 

I'm very excited to be putting this project together. It's been in the works for some time now and after many discussions and drafts of writing up the concept, I feel good about the direction it's taking and the launch of the kickstarter campaign at the end of February. 

Yep that's me...in front of the camera for a change.

Yep that's me...in front of the camera for a change.

I have always been far more comfortable behind the camera than in front if it but for this... I actually worked both sides of the camera to produce a video explaining the project and why everyone I've spoken to is so interested in seeing it get produced.

It's my first kickstarter campaign so the learning curve is steep but I'm excited about the possibilities. This type of funding was never available before this and it seems to me that this is the perfect project to pursue this avenue. 

I look forward to the coming months and meeting a whole lot of new friends. Hopefully one of them will be you. 

See you soon.

Always in Hope,