I am SO GRATEFUL to every single person who has asked me this question!! You are all so wonderful!! We are incredibly blessed to be a part of this community that is rallying together to end the death sentence of a rare disease. I hope you all know how monumental this will be when we get to the finish line! What a DAY it will be for a doctor who, instead of having to tell a mother that there's nothing they can do to stop their child from dying, gets to say for the first time, "it's confirmed that your child has ASMD, but BE ASSURED, there is treatment!"
Of course I recommend reading this entire post for my answer to how you can help, but if you are a frequent reader and feel totally up-to-date on our campaign, you can skip to the NEW STUFF HERE!
Our campaign has 2 missions:
Spread awareness of Damian and ASMD/Niemann-Pick types A & B
Increase funding for the development of treatment, for the Wylder Nation Foundation: the only organization currently laser-focused on treating the neurological degeneration responsible for the ASMD death sentence
The Biggest Help
The absolute top, single, most effective way to help our campaign is to share and continually share Damian's story. Why? Because you never know who is going to see it! It's how we got a spot on the local Los Angeles news. It's how the The Dr. Oz Show knew to reach out to us and do a segment on their show about Niemann-Pick Disease where we will be featured in an interview (episode is set to air in January)!!! Simply sharing information about Damian, ASMD, and/or our campaign has a domino effect where someone you know may share something because of you, and -- who knows!? YOU may be just a degree or two away from an incredible connection!!
At the beginning of this year, when we were in and out of the hospital for a couple months, I didn't share anything online because (1) I didn't know what was going on or know what benefit sharing would have, (2) asking for help was something I've always struggled with, and (3) I have never enjoyed being in the spotlight. Obviously, once I learned that asking for help could save my son's life, I immediately couldn't care less about my personal comfort zone and started talking. I have since been BLOWN AWAY at how wonderful people are and how quickly you all have dropped everything to help our family! I couldn't be more grateful, truly. Seeing the goodness in the world has absolutely changed me and though this experience is extremely trying, I have also never felt so much love around me.
All that is to say that sharing is powerful. There are good people in this world who would be willing to help if given the opportunity. Sharing Damian's story gives people the chance to respond and make an exceptional impact.
Ways to Share
Make a post on social media that links to the GoFundMe campaign
Print THIS FLYER and tape it to your door, window, car window - or leave it on your table when you leave a restaurant, library, coffee shop, etc.
Make and wear a shirt that says "#SaveDamian" or "SaveDamian.com" (or whatever you want!)
Send in a "hot tip" to news and media outlets via their website (they are always looking for good stories to share!)
Expediting Treatment through Funding
Those of you who read my last post know that we are rapidly trying to get Damian on an experimental drug that has only been tried once before with a child with ASMD. It seems the pharmaceutical company is being very gracious and accommodating and Damian's doctor (his "primary investigator") is working as quickly and as conscientiously as he can to get this treatment going. But we simply don't know how effective it is going to be. While this treatment is all we have right now, there are others that are currently in development that already are likely to be much more effective when they finally are able to be tried on a child. I am not willing to wait to see how good this first treatment is before starting to fundraise for another - we've got to keep expediting these other treatments now.
It is estimated that only $3 million dollars would provide the funding needed to cut the development time in half for gene therapy treatment, so that is our monetary goal.
Help Us Fundraise!
How much is $3 million?
If everyone who has already donated to our campaign (as of this blog post, that's about 32,000 people!!) donated another $94, that would equal $3 million.
If instead, they found TWO friends to donate $47 each, that would equal $3 million.
If instead, they found FIVE friends to donate $19 each, that would equal $3 million.
I feel like $3 million seems downright doable when seeing it broken down like that. It's just a matter of reaching enough people, or asking for monetary help in the right way. I'm learning that there are a lot of different methods of fundraising, and everyone responds best to different methods. Here are a bunch we are trying!
Ways to Fundraise
Social media is typically where we all have our largest audiences! Because people are accustomed to seeing random links and photos in their feeds, including a personal note/caption with your post is absolutely going to capture more people's attention and be the most effective!
Post a link to the GoFundMe
Do a Facebook fundraiser (donations should be for the "Wylder Nation Foundation")
Tell friends to shop on Amazon Smile instead of just Amazon! (more info below!)
AS A FAMILY/SMALL GROUP
I love seeing photos of families and neighbors and friends doing these fun activities and am so glad to hear that these have been a great learning experience for young kids! It makes me SO happy when you get to see first-hand what I am seeing daily: that people are SO GOOD!!
Lemonade/Hot Cocoa Stand
Tip: Many families who have done these have found that when they also give out the Save Damian flyers during their event, word spreads like wildfire! Their "customers" will take pictures of the flyer and post to their social media and then business gets booming!
AS A BUSINESS
We are being SO BLESSED by small businesses who are supporting my son and our campaign! The response from customers and employees has been INCREDIBLE!
Posting the Save Damian flyer in the store (ideally near the cash register or on the front window)
Benefit the Save Damian campaign or the Wylder Nation Foundation at a company event (i.e. a fun run, a pop-up fair, a donation jar at the company holiday party, etc.)
Other Ways to Donate
I truly believe that we can raise a substantial amount of money without anyone carrying a financial burden. Please, no one should feel a financial burden from this campaign!!!
With that, I have two exciting donation methods I want to share! One is brand-new, and one may be new to you!
This method of donating is FREE to you, the Amazon shopper! Totally free! It just requires you to start your Amazon shopping experience at a different URL.
Instead of going to Amazon.com, go to Smile.Amazon.com. When you "Get Started," you'll use your normal Amazon sign-in information and select a charity for your purchases to benefit. Then, anytime you start your Amazon shopping experience from Smile.Amazon.com or turn on Amazon Smile in the Amazon mobile app, Amazon will donate a portion of THEIR sales to the charity of YOUR choice!!
To benefit Damian and all babies fighting ASMD, you just need to select the "Wylder Nation Foundation" as your charity!
You know you will be shopping on Amazon at some point during this holiday season - please take a few extra seconds and, for FREE, help us raise some extra funds for ASMD treatment!
You can watch me sign up for Amazon Smile on this Instagram video (LINK HERE)
A BRAND-NEW OFFERING for the charity-funding app "RoundUp"
You know those apps that track your spending and when you spend $14.50 on something, it will automatically round-up to $15 (or whatever the nearest dollar is) and put that extra 50 cents in a savings account?
This is basically that, except that at the end of every month, it will take all those extra pennies and donate it to the Wylder Nation Foundation! When I signed up, I also found that you can opt to put a cap on the donation so you will never donate beyond X amount of dollars per month.
*Text "SaveDamian" to 63975 or visit https://roundup.app/p/SaveDamian to register!*
Again, I want to reiterate that absolutely no one should feel obligated to make multiple donations and there are plenty of other ways to help our campaign without spending money!! Any way you are able to help our campaign is indescribably appreciated!!
But I do think this is a great fundraiser for those who don't mind rounding up their purchases to the nearest whole dollar! I have been using it for a few weeks now and so far it has been great!
We Are Making a Difference
We are DOING THIS! Far more than 32,000 people have now at least heard of ASMD, and we have already funded the initial study for the very first drug on our path to develop a total treatment. This is INCREDIBLE!!
I am so grateful for each of you - for reading this post, for sharing Damian's story, for your donations, for your sincere prayers, for your comments and messages on social media that lift me up so much, for your friendship, and for everything you are doing to support our family. Thank you for caring about my son and believing, as I do, in miracles.
Your kindness and your encouragement mean everything to me. Thank you so much.