I lost my daughter to a terminal illness when she was 21 mo. old. I launched a nonprofit, Love Not Lost, to help others terminally diagnosed & to support people in grief. I am currently in NYC doing a photo shoot for a mom with breast cancer &...

What are ways the non-profit assists those dealing with grief? Is it the same way you dealt with yours?

The ways we help others has definitely been inspired by my own journey as well as other people I hear stories from... I have asked questions in different subreddits to find out what has really helped people and talked to the people we are serving.

There are a few main ways we support people in grief. One is directly showing up for the free portrait session. It’s often a time of acceptance and beautiful emotions come out with the ones they love. Our desire is to celebrate life with people while they have it so we try to create meaningful experiences when we can.

Next, we deliver a beautiful hand-crafted eco leather photo album (think wedding heirloom quality). This book not only preserves memories but gives loved ones a space to grieve once their loved one dies. The book holds space for people without fear, judgement, or expectation that you often find elsewhere.

We also follow up with people and do our best to continue relationships to let people know they are loved and remembered. We send out holiday photo ornaments and unexpected gifts.

We are growing to support the greater community in grief by adding empathy cards, portrait session gift certificates (that you can send to people who you think might want a session), adding to our resources page, and have a few other things rolling out in 2018.

Thank you for your question and feel free to message me with ideas if you have any on how we can better love and support people in grief!

what is the photo shoot and "eco-leather" photo album cost?

$850

Where did you get this number? We have different amounts for travel sessions and for local sessions. Obviously local sessions are much cheaper.

Go to your website and scroll down, the $850 number appears under donate.

Thank you. That is the average for both travel sessions and local sessions. We have broken it out more in our crowdfunding page if you’re interested in the photo book, session, photographer retreat, etc.

What is a photographer retreat?

We provide a photographer retreat for every volunteer photographer before they start serving with us. It’s a weekend where we focus on self-care, empathy, grief, and special photography needs when entering into these sensitive situations.

We want every photographer to be equipped and able to enter into the lives of the people we are serving with compassion, love, and understanding. No judgement. No fear. No expectations. The training weekend allows the photographers to build community with each other, talk openly about their fears or experiences, and learn what they need to know to be their best possible self and photographer no matter the situation.

You truly are such a blessing to this world. Not only are you a survivor of such grief, but you're using your own personal experience to change other peoples lives, to extend a hand letting them know they aren't alone in this. Thank you.

Thank you for your comment ❤️

Have you considered adding linking them to local grief counselors to help with their loss?

We are working on that. We need some legal help to make sure we don’t get in a mess since that can be really touchy.

how much are the "hand crafted" albums?

They would retail for around $250 if you were to buy one for your family.

What are your admin fees and what are you paying yourself? Really this just seems like one of 10,000+ charity/ngo/non-profit work avoidance schemes.

I can totally understand your skepticism as charities have done an awful job with transparency. My salary is $35,000 per year and my part time Director of Operations is currently making $10,000. We are hoping to give her a raise soon because we want her to be able to better support her family. If you define admin fees, I am happy to get specific with those too if you’re wanting more.

I know there’s no way for you to know that I am a genuine person who truly just wants to help other people going through the worst time of their lives, but I invite you to come to our Spring event on March 1 in Atlanta to get to know us. It will be held at the King Plow Arts Center and I would love to talk with you in person and allow you to hear from the people who have been through our services. You can sign up for our newsletter and get an invite via email or send me your personal address and I can mail you one.

I too am curious what the break down of your spending is. What %goes to what, I understand you pay yourself 35,000, but if you are writing off travel expenses, hotel expenses, food expenses, then thats all something you should include. So I am curious what the actually breakdown is.

Hey there - sorry for the delay in my response. I was photographing a session and didn’t expect this to blow up like it has.

We will definitely be clarifying all of our financials in the next few weeks on our website under a new Q&A page I will create.

Please check back on our website and we will address the most commonly asked questions here, including all the financial questions.

so if someone needs money for chemo for breast cancer ya'll help out or do ya'll wait until they've died to start helping?

We don’t provide any financial assistance. Our mission is to celebrate and preserve memories through free portrait sessions and photo books, and to support people in grief. Please visit our website if you’re confused about what we do. Thank you!

i don't think you're a worthwhile charity. this is like giving a kid a toy while his father dies from pancreatic cancer from a lack of funds.

That’s your opinion and you’re entitled to it. I started this because my daughter died and I found that one of the few things that helped me through grief (and bring me so much joy now) are the photos we have together as a family.

People we have served tell us stories how the photos have helped them and it’s powerful. I know we are making a difference in people’s lives. That’s what really matters.

I think an organization to help those left behind preserve the memory of their lost loved ones is worth while.

Maybe you should donate your millions elsewhere.

i just don't know that you have to spend 50k + on staff to do it.

Then don’t donate to them. You came to this thread bashing them right out of the gate.

If this is a full time job then they need to pay people to do it. That costs money. $35,000 isn’t some crazy amount it’s actually very little money if this is a full time endeavor.

i would be surprised if 35k is the only thing she actually receives .

It is.

what do you do and why can't you be the director of operations? you to busy fundraising your salary?

I photograph families, train our volunteer photographers, partner with hospices and hospitals, run our social media, marketing, and event planning. I am in charge of fundraising, communications, budgeting and strategic planning. I run the board of directors and also recruitment for volunteers. I am also designing the photo books and the prints/gifts we give to the people we have served.

My director of Operations was hired to help me communicate with our applicants, schedule volunteer photographers, and maintain communication between our partners and donors. We really need to get her up to full time, and are hoping we have a good end-of-year Giving season to help is so that.

Id like to volunteer for some graphic design.

That’s awesome! Will you email me at [email protected] with your website and contact info?

so how much revenue is spent on the charitable things? not the travel or meals you write off. you have a board of directors? are they the main fundraisers?

I am not sure what you mean by charitable things. My board members are are all contributing members, but this is a true grassroots effort and we rely on individual donors, corporate partners, and grants to keep doing what we do for free.

Our big event every Spring is where we get a large part of our operating budget. Hope that answers your question! Thanks for your comment.

You should be able to look this up on www.guidestar.com

We just submitted our first Form 990 a few weeks ago. Guidestar takes some time to pull that into their system.

Speaking from personal experience (I lost my daughter at infancy), I've found that grief (particularly with regards to children) is a very taboo subject socially. Do you have suggestions for opening dialog so people can get the support they need from friends and family? Isolation made the experience exponentially worse for me and a decade later, I still find it difficult to discuss.

Also, plug for /r/babyloss.

I am about to photograph a session now, but will come back to this for a full response later! Thank you!

Hey, I’m back. Thanks for your patience. Again I am so sorry for your loss and can totally relate to the socially awkwardness in dealing with child loss.

I am sorry you felt isolated and certainly that you still struggle. I think communication is critical in the grieving and healing process. A good counselor is priceless, but make sure you find a good one. As with any profession, there is a spectrum of ability.

Books from Brene Brown helped me tremendously (we have one our our resource page called Braving the Wilderness that might be especially helpful for you) and Crucial Conversations (NY Times best seller of multiple authors) also helped me.

I think the best advice I can give is to be honest with the people you care about who you trust. If you feel like the past ten years you’ve been abandoned in your grief, voice it and let people respond. The worst part of staying silent is that you hurt without giving anyone the chance to step up and love you when you need it.

I hope this has been helpful and I really do hope you can find comfort and love in your relationships to feel supported. Feel free to message me if you want to talk further.

You are doing some wonderful stuff here for families. A photo can be so valuable.

My question is a hard question for me to ask and I understand if you don't want to answer. You do photography for illnesses that are terminal. Sadly, there are many illnesses that are terminal. I'm sure you get many requests and I'm sure you get limited funding. If there are too many individuals who would like a session and not enough funding, what is the selection process like?

You also mention on your website doing multiple sessions for people. How does this compile for individuals who are terminal but don't have a specific date of when they might pass or their date is years in the future? Do you continue to photograph them every year, or whenever the family asks, or do you ever have to face the decision of declining a family that has requested multiple photo ops for another more terminal case? The decisions must be incredibly difficult.

Edit: Also, do you ask the person being photographed to provide proof that their illness is terminal?

Thank you for your thoughtful questions! We have had cases where the person dies before we can photograph them and it’s heartbreaking.

We do our best to schedule the sessions based on the severity of the cases, but sometimes there’s just no way to know.

We try to photograph as many people as we can. This is our first year doing a second photo session for a family - the reason I am in NYC. We are thrilled when the person we photograph is doing well and is up for another session a year or two later. If we have the means to do it, we absolutely will.

Have you heard of a charity in Australia called HeartFelt - (https://www.heartfelt.org.au/) - they organise amazing volunteer professional photographers out to shoot recently deceased babies so the families have at least something. Sounds morbid initially until you read feedback.

That’s really awesome. Thank you for sharing! There’s an organization in the states called Now I Lay Me Down To Sleep and they do something similar.

I called them when my daughter was diagnosed but because they only serve babies who don’t make it home from the hospital, we didn’t qualify so I asked a friend to come photograph the first session we did as a family.

The more I searched, the more I realized there wasn’t anything else available for older people facing a terminal diagnosis so I started Love Not Lost. Thank you for sharing the resource. I will definitely look into it!

have you ever done a photoshoot for someone that was unable to afford healthcare?

Not sure - we don’t ask those details. We serve everyone regardless of income.

I currently have a ministry sending out handmade cards to grieving mothers. We launched in April 2017! It’s pretty well known in the Instagram grief community and I do hope to become a registered non-profit once I get the funding! What advice do you have to make the process go as smoothly as possible? Thank you for what you’re doing.

Thanks for your question and for what you are doing too. I talked to a lot of people, researched (including helpful books from NOLO.com), and started building my board before the 501c3 approval came in. Definitely get the right people on your team who believe in what you’re doing!

My family has gone through something like this, though it was violent crime instead of an illness. I cannot imagine wading in every day to help others with this situation. When it originally happened, I just wanted people to stop saying they understood and to go away. After three years, most days I am just trying and failing not to think about what happened as something tangentially related brings it up over and over, every day.

Do you find dealing with this every day has helped? Does the wound ever salve or is it just the same dull throbbing emptiness over and over forever?

I am so sorry for your loss and thank your for sharing.

Dealing with this every day has brought healing. Don’t get me wrong, it wrecks me, but I know the world needs more people who are willing to embrace pain and help people who are hurting.

We needed that, and luckily found a few friends and family who stuck with us through hell and back. But there are families I meet who don’t have anyone left. They’ve all been abandoned because it’s “too hard” or people just don’t know what to say or do and so they don’t do anything.

That’s why next year, we are really working to equip other people to show up for the people they love in addition to what we’re currently doing.

Also - the healing is happening but the grief will always be there. My love for my daughter will never disappear and so my grief won’t either. But I am learning how to carry it better and share my love for her with the world. Hopefully that answers your question!

No questions, just wanted to say thank you for what you are doing. Can you post a donation link for us?

Sure! We have a crowdfunding campaign happening right now and our general donation page which you can access from our website. I will link to the crowdfunding campaign since that’s more fun! LNL Crowdfunding

How do you just start a non-profit? Is it similar to just starting any other business? How did you start your non-profit? In terms of finances, applying for non-profit status, opening partnerships to help people, and even getting a few people on board to volunteer and help out.

I'm curious about the business logistics of starting a non-profit.

I am leaving for the portrait session now, but I read this and wanted to let you know I will respond when I have more time to give a full answer. Thank you!

Hey - I’m back. Thank you for your patience. Starting a nonprofit is not for the faint of heart. We started by incorporating in 2015. I invited strategic people to sit in my board - people I knew believed in me, my vision, and had the talents and skills to further our mission while also having the heart to love others well.

Then we started the 501c3 application and it took months. It was a lot of work to figure out, but with some amazing help from an ATL law firm, we submitted at the end of 2015. They sent papers back because the ink we used to sign our signature with wasn’t dark enough if that is any indication how strict they are... we were approved in the Spring of 2016 which is when we had our official launch party.

I was a wedding photographer before I started LNL so I was able to ask a lot of my industry friends to donate their services since we had nothing. Seriously. We threw together a party in a random gallery space and shared our vision. We raised money to start serving families and did just that.

That’s how we got started!

If I donate to you; what percentage of my money goes to salaries, marketing, administration costs, photo shoots, equipment costs, etc...?

As the executive director, myself and our volunteer photographers, provide the families we serve a 100% free service in their greatest time of grief. What donors can expect is that their gift goes directly towards our mission alongside these families, creating a platform to find more families to serve, and equipping future photographers to volunteer with us!

Our board has done their due diligence to compare wages, administrative costs, and other operating expenses to organizations who are in our same industry. We are looking forward to when Guidestar posts our first Form 990 to better inform donors, but we don't expect to see that until next summer.

I lost a little one myself to SMA at 22 months, and am glad to see some more public exposure to it, but with so little public awareness of Spinal Muscular Atrophy, why not put it more in the front of your presentation instead of just saying a terminal illness?

Thank you for your comment. I am hoping people go to the website and/or watch the video. I only had so many characters and last time I said SMA I got hate comments for not spelling it out and Spinal Muscular Atrophy is a lot of letters. I hope you understand. I am doing what I can to help raise awareness. Thank you.

What are the most challenging steps in starting a nonprofit? Any tips for someone who hopes to start one?

The 501c3 application is definitely a huge hurdle, but you can get through that with the right help.

The more important thing is to make sure you have a problem you can solve that no one else is solving. Surround yourself with people who believe in you and what you’re doing and build your board strategically.

I have an incredible board of directors. They help keep me grounded and hold me accountable, as well as furthering the vision of LNL in unique ways because of our different life perspectives. They are great people with big hearts that also happen to be very talented individuals. I also have mentors and am continually investing in my development as a leader.

What are your thoughts on end of life care? Should we do what we can to prolong life or seek the highest quality life a person can live even if it means less time? Which one prepares families better for the grieving process?

I find a lot of my thoughts align with BJ Miller from Zen Hospice in SF. Check out his TEDtalk if you haven’t already. I went to one of their trainings on mindful caregiving and I really support the work they do.

I can’t speak to what’s best for everyone because everyone is so unique - and therefore their lives and grief are too. One of the biggest things I have seen people struggle with through grief is regret, so if I had to make a blanket statement, it would be to communicate with your loved ones. Make sure all expectations and desires are clear, then love and love the absolute best you can.

What do you eat for breakfast?

Depends on the day. A banana - or if I have time, a fried egg sandwich with avocado

You're an amazing person. I did a breastfeeding photoshoot for a friend who was just diagnosed with cancer and had to wean her 6 week old baby. I don't think I've ever cried so much while editing photos. I have to ask a question so this gets posted, so what is your favorite ice cream?

Hahaha - love the question. Vanilla with chocolate syrup.

Thank you for loving your friend in that way. The session I did in the hospital (photos shown in the video) affected me the same way. I was ugly snot crying at my computer for days...

What you are doing is fantastic, using a tragedy in your own life to help others. I try to do this in my own life, helping those who suffer from anxiety, depression, suicidal thoughts, etc because I've been there. How has helping people deal with their grief affected you personally?

Thank you for your comment. I’m on my way to the portrait session, but I will try to come back to this and respond with a full answer afterwards!

I've been fortunate enough to never have a friend or family member go through something like this, let alone lost someone to terminal illness.

Having been around it a helluva' a lot more than me, what would be your advice/wisdom to someone who is experiencing terminal illness right now, or equally somebody who has someone close to them going through it?

Unsure why this touched me so much, but have donated to the cause because it felt so necessary. Keep up the beautiful work!

Thank you. If you have someone you love in your life who is suffering from a terminal illness or another really hard situation, my advice is to show up. Don’t be afraid of doing the wrong thing or saying the wrong thing, just focus on loving that person.

Be honest. If you’re not sure what to say, tell them that. “I don’t know what to say, but I am sorry and I am here for you.” Is so much better that, “everything happens for a reason” or other cliche phrases that aren’t helpful.

When we’re hurting, even something as simple as sitting next to a person can be the most meaningful act of love. People need to be loved and understood. Just show up.

For those facing the diagnosis, my advice is that there can rarely be too much communication. Sharing feeling, needs, desires, and struggles with people you love who love you back is a critical part of living well and allowing others to help you through this really difficult time. Don’t push people away because you want to spare them and rob yourself of love in the end.

Thanks for asking this!

How is the mom with breast cancer doing? I hope she is doing well and recover soon!

Thanks for asking - all things considered, she’s doing well and I am really excited to see her again!

How much do you get paid for this? And what percent actually goes to helping people?

$35k is my salary, which I shared earlier. I will be adding a Q&A page to our website in the next few weeks to share the rest of our numbers. Please check there for the information. Thank you.

I have a question but first I just wanted to say I admire your work. Turning such a sad experience into something positive that helps others is really admirable. You seem to be getting really beaten up on this AMA. Please keep doing your great work. It makes a difference.

My question is this, how has building LNL affected your perception of your own tragedy? Has it helped, hurt, added perspective?

Thank you. I appreciate your comment. I think building LNL has made me really proud to create a legacy for my daughter. In a way, it brings purpose to my suffering.

I think it’s an ongoing reminder that life is short and to live and love the best you can everyday.

My elder sister used to work helping young children with cancer and had to quit because it was so emotionally difficult. So my question is how do you stay so strong through it?

Thanks for your question. It’s definitely hard emotionally. I cry when I learn of a death of someone we photographed. I’ve learned to give myself what I need to grieve.

A lot of my strength comes from self-care, a great support system around me, and my belief that everyone deserves to be loved... and if we don’t show up, there might not be anyone who does. Hopefully Love Not Lost can Help change that by opening the conversation around grief and equipping others to show up for the people they love.

how on earth do you get up and knowingly walk into that kind of emotional turmoil day after day after day after day?

i could not do that. not without drinking myself to sleep every night

It’s not easy, and it’s certainly not for everyone, but I think we can handle a lot more than we give ourselves credit for.

With so many non profits that exist do you feel like your work is still meaningful? I only ask because I have concerned quitting my business to start a non profit for someone I lost but am hung up on the fear of not making a difference.

Absolutely. I wouldn’t have started it if I didn’t believe it would make a difference. As it’s been said before, there are a lot of causes that serve a specific purpose. We can all do our part to make the world a better place. Best wishes to you.

[edit] Ps- it might help to volunteer with a nonprofit with a similar mission first to get your feet wet. You don’t have to quit cold turkey and I would typically advise against it. I volunteered sessions for years before I started the process for the 501c3.

Are you looking for a summer business intern!?

We are open to it. Please send me a message. Thank you!

What's the best way to deal with the loss of someone close to you? I know it sounds silly but I don't know how I will deal with the loss of my Siamese cat when he gets older. How do you deal with the old reminders, the gap, and everything else? Sorry, I am not trying to be a funny troll or belittle anyone. But when I lose a house pet or someone close to me I just get down. Almost tearing up writing this

I totally get it. When I was 5, I got a puppy and she lived until my college years. I would cry thinking about losing her and was absolutely devastated when she died.

I think everyone is different how they cope. Some people need to get another pet right away or fill the gap with something else. Some people will create new traditions to honor the memory. Some people have a burial and plant things to honor the life. It’s really up to you and what you feel is best.

Best wishes and I hope you have much more time together. Regardless, I hope you enjoy every day with your cat.

Do you still get stuck spinning your internal wheels in life's little ruts and foibles after embracing your work ?

How has it offered some permanent change in perspective ?

Absolutely I get stuck now and then.

I think my perspective was permanently changed when my daughter took her last breath in my arms. I realized that life is so short and death is very permanent. I didn’t want to waste the time I have left. Death has become a motivator for me to live and love the best I can every single day.

I am sorry you lost daughter.

I’m a photographer in the NY area as well. We work with Friends of Karen, a charity which raises funds and offers grief counseling for families with a critically ill child. If you are looking to branch out or partner with other charities they might be a good contact.

How does a non profit like yours work? Do you rely on donations, grants, volunteers, etc?

That’s a great resource to know about. Thank you!

We rely on all of the above. We have currently been operating with mostly individual donations, a few small grants, and volunteers. We will be relying even more heavily on volunteers as we grow!

Do you accept bitcoin?

Not currently. That’s a crazy thought though. Thank you for your question.

Well a bunch of people are newly rich and are looking for causes. Head over to r/bitcoin to learn what you need to get started.

Thank you. We will look into it!

What advice would you offer to someone looking to start a non-profit? Anything that they might not expect?

I would suggest finding a cause with a similar mission that you have and volunteer first. If you have specific questions, feel free to ask more!

How did you find the courage to keep going after losing your daughter? So sorry for your loss, and huge kudos to you that you were able to keep going and help others. How we react to tragedy speaks volumes of our character. You must be an amazing person - you are surely making your daughter proud.

Thank you. I really appreciate your comment. Honestly, I knew I had two options: I could either stay in bed all day and feel sorry for myself (which was tempting) or I could get up and make the most of the time I have left.

It’s a struggle. I don’t have all good days, but that’s life. And I hope when other people are having bad days, we can become a people who love and support one another. If Love Not Lost can help make that happen, I would die a happy woman.

Do you ever feel burnt out or weighted down working with people you know are terminal? If so, how do you cope with it?

Definitely weighted down some days. There are mornings I struggle to get out of bed, but I have learned what I need for self-care and giving myself permission to grieve. It’s really important for me to listen to my body.

A good support system in friends and family is also key. A great counselor is helpful as well. Thank you for your question.

Do you know about this site? https://pineapplefund.org

Yes! People have shared it already. We will check it out - thank you!

Do you prefer soda or tea?

Totally depends on the food I am eating Pizza = coke while Chickfila = tea

Did you play the game "That Dragon, Cancer"? What are you thoughts on it? Thanks for what you're doing.

I have never heard of that, but thanks for your question.

You're doing a wonderful thing. You're proof that there are still good people in a weary world, and I want you to know that. Because I have to ask a question: what is the food that your holiday just isn't complete without?

Hahaha. Thank you. Mashed Potatoes. Hands down.

Much respect,How did you deal with the grief if you do not mind me asking?

Not at all. I have learned a lot of self-care practices and listen to my body. Meditation, yoga, rest, healthy eating (or comfort food on occasion), sleep, crying, etc. I try to give myself what I need.

If I need a good cry, I have been known to watch Braveheart or another tear jerker to help me get started and just let it out. I do my best to not cover up emotions or stuff them down in my depths. It’s much better when I allow myself to feel them 100% and if needed, I will definitely schedule an appointment with my counselor.

Thank you for answering! Yea I was taught to never cry as kid but sometimes you just gotta let it out :)

Absolutely!

Though your nonprofit may not include it, how do you feel about the use of psychedelics or other unconventional drugs to ease the anxiety of the terminally ill patient?

We don’t include it at all, but I think unconventional drugs can be very helpful for terminally ill people.

Did you get the idea for the name of the nonprofit from Joe Buddens albums?

No - I actually don’t know who that is.

so you support a UHS?

We are starting to build partnerships and are focusing on Atlanta first. We have partnered with several hospices and one hospital in the greater ATL area. We hope to add a lot more next year! Thanks for your question.