Project Sebastian
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Valencia Boulevard
Valencia Boulevard
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Project Sebastian provides support, action, and awareness for all families affected by all rare diseases.
To raise awareness about rare diseases.
We support families suffering from these horrible diseases by offering support groups and individualized therapy. Collaborating with other foundations, researchers and institutions.
501c3 compliant
EIN # 81-4325865
07/31/2024
❤️❤️❤️
🌟 **Happy International Day of Friendship!** 🌟
Today, we celebrate the incredible power of friendship and the beautiful connections that make our lives richer and more meaningful. At Cure Batten, we understand the profound impact that friends have on our journey, providing unwavering support, love, and hope.
Batten Disease is a challenge that no family should face alone, and it's the strength of our community and the bonds of friendship that help us move forward. On this special day, we honor the friends who stand by us, the ones who lend a helping hand, and the many who bring smiles to our faces even in the toughest times.
To our amazing supporters and friends, thank you for being the light that guides us. Your friendship is a beacon of hope, and together, we will continue to fight for a cure and support families affected by Batten Disease.
Let's spread kindness, cherish our friendships, and work together for a brighter future. Tag a friend who has made a difference in your life and share a message of gratitude today!
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Feel free to adjust or personalize it as needed!
07/29/2024
Another crazy week in the books and definitely some surprising moments. I found it easier to just smile and breathe through the difficulties and enjoy this moment. You never know how many more you’ll get.
07/26/2024
Kindness is all around us. Just ask for help and you may just get more than ever! So grateful for my my friends for his amazing craftsmanship!
07/22/2024
"We absolutely insist on enjoying life...We will intuitively know how to handle situations which used to baffle us."
This is #21
07/19/2024
Well, after a very long couple of days, we finally made it home. The EEG recorded at least five seizures over four hours. This was an awful experience as Sebastian was not compliant, very upset, and obviously afraid. I can tell you, as a a father, my heart was hurting every step of the way on this visit. I'm so glad we are home and got to properly celebrate this young man's life. Family, cake, and beer, just like his 21st birthday should be. Grateful to my friends and family that checked in. Thank you for all of the Facebook messages, Instagram messages, and texts. We felt very special. Now it's on the Palm Springs!
07/17/2024
So we are back at getting another EEG for the next couple of days. They are so many questions as to what sebi is going through. Non stop seizures of many types everyday since the last week in June. I’m not gonna lie. This kid is beyond tough. I don’t know how he has the strength. I am just in awe of him. We are looking for many prayers for a good outcome and some great data so that we can help Sebastian feel better and rest. Batten disease is a fu***ng monster and it is definitely winning right now.
💪🏼
07/17/2024
Just when you think you're too exhausted to do much, you get a phone call that could change everything. Today, while I was napping, I got a phone call from my local congressman's office asking for a meeting. I had forgotten what I wanted to say, as I requested a meeting in February of this year. It might've been something as simple as I would love to invite you to our annual fundraiser. But that was not what it was about. My local congressman here in Santa Clarita Mike Garcia for Congress wanted to check in and chat about Sebastian and my ideas.
I did have a few ideas, of course; however, I was so burnt out and depressed that I had forgotten about them after battling with Big Pharma and other foundations. See you when you learn about the ugly truth about treatments and cures it's almost like you get punched in the gut so many times you can't breathe. Our discussion centered around three different ideas. Extend benefits of the federal level for all families like mine and erase the crippling threshold to be qualified. The second one is called on the clock. This is where people hold licenses and patents or data ownership for potential treatments. I am proposing that these entities only have 48 months to move the science forward, or they will be forced to give up their licensing agreements, ownership, and or patents so that the next person can try and help rare disease families have a chance. Our third discussion was the Promising Pathways Act. I was pleasantly surprised that the congressman was already a supportive member of this bill. This has gotten quite a bit of heated discussions as to why it should not be passed. I am constantly scratching my head. Why do entities like big pharma, foundations created to help rare diseases, and the FDA not allow this to happen? I can only surmise that it is about money. It is always about the money and never about saving people's lives. I will try to change this, and I have found my advocacy voice once again.
I am looking forward to what happens in the coming months.
Monica L Dudley
07/15/2024
Join us every Monday evening at 6pm pacific for a one hour closed meeting for men who are in the rare disease space. In this one hour zoom meeting, we will connect and tackle all of the emotional problems that we as men are dealing with. So whether you’re a parent, friend of a family suffering rare disease, doctor, lawyer or just someone that needs an ear, we are here for you. For all those interested please drop a comment to register for this meeting.
07/12/2024
Sorry for not checking in Fam, but this month has been rough. Some children have gained their Batten wings, and Sebastian has not had one day without a seizure since the end of June. I feel as though I am taking on his debilitation more lately. Every day, he has multiple episodes of all different kinds of seizures. He is sleeping a lot and not doing very well. With everything happening around me, I usually isolate. Thinking a lot about the future and Project Sebastian as we advance, what that looks like, etc. But I know I can't hide from you. Just know that our hearts are breaking for these families that are in mourning. While we continue our battle here, we wish everyone at the Batten conference a great weekend. We will not be attending. We are with you in spirit. Here are a few pics of Sebi. Hopefully, they will make you smile.
07/07/2024
Such a heavy loss. Please say some prayers for this incredible brave girl and her family. 💔
You can’t keep this kid down for long! This kid gets knocked down six times and he will get up seven! We will continue to fight this fu***ng disease. There is no tomorrow!
🇺🇸
We are no longer on Twitter/X FYI
06/18/2024
IYKYK ❤
It's International Batten Disease Day 2024. Today is the day for advocacy and stories. I want to remain positive and hopeful, but it's just not one of them today. As the Batten community spreads awareness, just like I do, today I feel angry and resentful at this disease. Your journey is probably like mine in some respects. There have not been many joyful and positive moments in this journey. And while we all strive for change, it usually falls upon deaf ears when it matters the most. Batten disease is a rare disease that very few children make it to adulthood. Sebastian is one of the lucky ones (21 years old) and is labeled super ultra rare because of his split gene of Batten disease CLN8. So far, there is not one other human that has Sebastian's genetic makeup. As testing becomes more available and affordable, I'm sure someone will have the same situation. For those reading this and wanting a definition of this disease, here you go. Batten disease is caused by genetic mutations in more than a dozen known genes that affect the cells' ability to break down and eliminate cellular waste. This leads to a buildup of toxic substances, especially in the brain, eyes, skin, and other tissues, which damage and kill cells. The progressive cell damage and death causes a range of neurological symptoms, including:
Vision loss
Seizures
Cognitive decline and dementia
Problems with movement
Personality and behavior changes
Loss of developmental milestones
Impaired sight and hearing
Behavioral and learning problems
Loss of language and motor skills
These are just some of the scientific facts of this disease. However, it does much more to the family, relationships, and everyday life, and people would only understand if you're dealing with the disease. I am an advocate for positivity in connecting others within the space, but lately, it has been challenging as some harsh realities have been made known to me. In the beginning, after diagnosis day, our second as we were misdiagnosed, we rushed to the Internet to find out what this was and, who can we contact, and what help is available. We created charity organizations to help raise money to begin our own fight against this horrible disease. We have bake sales, car washes, and online fundraisers to raise money to pay scientists to begin research on treatments and cures. We have to do this, because insurance does not cover rare diseases. In the beginning, you go anywhere and everywhere for information, not realizing other people's agendas. Remember, just because it's on the Internet doesn't mean it's true. People are praying on your desperation and often we find out the hard way. While other variants allowed for ERT, such as enzyme replacement therapy, our family investigated and chased gene therapy replacement. As members of the CLN8 class, ERT would not work for us. You see, there are 14 known variants of this horrible disease, and each one of them needs a specific treatment and cure because it is a genetic disease. While some of these variants share commonalities and characteristics, the treatments differ for some. My ex-wife and I raised over $1 million over the years to fund research at a Children's Hospital, following in the footsteps of other families. However, that research was sold and licensed to a big pharmaceutical company. You would've thought we hit the lotto, and we were on our way to treatments and cures. But you would be wrong. You see this pharmaceutical company lied to the families and shelved all of the programs for future use for fear of missing out on Gene therapies. While Gene therapy will be helpful one day, we aren't there yet. More time and research are needed on this practice. So, the pharmaceutical company decided that due to the lack of subjects in CLN8, there was no way to monetize my son's illness or others, as they said. Therefore, there would be no more research moving forward. "Good luck," They said. So, for 18 months, we had hope that things would change. Once you sign an NDA, you can't go anywhere else to find information on what's really going on. Not only did we miss out on other opportunities to get help, but we also lost time on fundraising. Time is the most valuable component in this world. Once it's gone, it will never return. It is so precious. A swirl of emotions is coming through as I write these words. My anger and sadness are starting to bleed onto this page. Also, it is a bad day here as my son is having a cluster of multiple seizures today. Of all days, right?
So what do you do? You can not obtain the information or the data. You don't own it anymore. All the money raised is gone, and your child is still dying. You are at day one again, just like after diagnosis day. So frustrating. However, you must keep fighting, maybe in a different way. But how? I am so drained. But we rose once again, created support groups, and connected with other families where you can share information and continue getting the word out. Right now, there are a handful of states that are recognizing this horrible disease. I applaud them and am excited about their efforts to raise awareness about this dreadful disease. We also did it in California; you can do it in your state or country. I pray for the families that have lost their children; some families have lost more than one to this disease. Some of them have continued the fight for others, such as Sebastian and many others. This must be a difficult day for them. Please pray for their families. We see you and stand with you. Now, as you're reading these words, I hope you understand that this is my story, and it may not be yours, but we need to share these experiences. I have always been transparent and have probably upset some people. I will not apologize for that. I will say I am trying to become better at this, being a Rare dad. More useful. Yes, I believe in research and science, but we must get to a different path. One that centers on human lives first.
If enough of us continue to advocate and raise awareness in each state or country, one day, people may prioritize human lives over profit. Then, we would truly have a cure.
06/03/2024
What a fantastic event we had. Thank you to everyone who supported us in person and online. Here is project Sebastian's photo dump of the rare warrior run 2024.
Sebastian had a blast! I gotta admit, so did I!! Your support of this run helps Project Sebastian continue with its support of all special and Rare families with support groups, individual counseling, and Zoom meetings! We are very appreciative of all of you! And yes, we had a lotta fun too! See ya next year!!
Thank you to all the runners who came out today. You were all amazing! Here are the final results! Remember, there are two races to review. Hit the toggle at the top to find your race and name!!
https://results.raceroster.com/v2/en-US/results/4wpjs7pjt2gtjw5k/results
Results 2024 Rare Warrior 5K - Santa Clarita, US - Race WebsiteAdditional race information can be found at http - June 1, 2024
06/01/2024
Great article ahead of the race tomorrow!! Thank you KHTS - Santa Clarita - Hometownstation.com
Project Sebastian Invites Community To Help Children Fight Rare Diseases Project Sebastian is scheduled to host its 3rd annual Rare Warrior 24 5k and 10k races this Saturday...
05/31/2024
Come out tomorrow and help us support all of our amazing runners for the Rare Warrior Race 2024! 🏃♀️🏅 It's not too late to sign up. Head to the link below. We hope to see you there, thank you for supporting Project Sebastian!
https://runsignup.com/Race/CA/Valencia/RareWarrior24
05/30/2024
This weekend, as we put on our Rare Warrior Run, we will recognize the work that we have done to bring awareness to California. Senate- joint resolution 25 created by Senator Scott Wilk and myself Christopher Velona recognizes the first weekend in June for . I am so proud to continue our advocacy in a much greater charge. Project Sebastian is just one of many support systems in the rare disease community, and we will continue to help other families in rare. We are honored to be here!
05/29/2024
// OUR MISSION AT PROJECT SEBASTIAN //
Project Sebastian provides support, action, and awareness for all families affected by all rare diseases.
Rare diseases claim the lives of most children and teens. While most people wait for a cure they have nowhere to turn. We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. We realize that connecting with other families is essential to this journey. We will provide you with group meetings and counseling so that you can connect with others who are struggling like you. Join us this Saturday to raise funds and awareness for our community. Let’s make a difference together! Sign up now and show your support for families affected by rare diseases in our community. See you at the starting line! 🌟
Event Details:
📅 Date: June 1st
📍 Location: Heritage Park, Santa Clarita, California
https://runsignup.com/Race/CA/Valencia/RareWarrior24
05/28/2024
Wonder why he’s smiling? Maybe because the third annual Rare warrior run is this Saturday at 8 AM! I have to admit the whole family is excited. Hope to see you all there.
 https://runsignup.com/Race/CA/Valencia/RareWarrior24
05/27/2024
🚀🏃♂️ A huge THANK YOU to more of our amazing sponsors for bringing the Rare Warrior Run to life! Your support is invaluable and drives our mission forward. Together, we’re unstoppable! 💪🌟
Haven’t signed up yet? Reserve your spot now at the link below!
https://runsignup.com/Race/CA/Valencia/RareWarrior24
05/27/2024
New swag is just in time for the Rare Warrior run!! Get yours at the run or you can order them now before we sell out!!
For inquiries leave a comment below!!
#2024
12/07/2023
If you're in the market for a new company that handles it "all in one", look no further. KHTS marketing handles your website design, SEO, or advertising. I have contracted them to handle both of my businesses, Project Sebastian and CSG Consulting.
They provide quality work, a fair rate, as well as experience for over 30 years in the valley. We recently used them to promote one of our fundraisers and we got over double the ticket prices. My website using their SEO techniques has increased also!! More traffic means more awareness and more clients!! We are super satisfied with KHTS - Santa Clarita - Hometownstation.com and all they have to offer!! Give them a call today at (661) 298-1220 and ask for Jeri Seratti-Goldman She will make your holidays bright!
12/03/2023
Our first annual caregiver appreciation dinner was last night. Here we honor all the people that help Sebastian on a daily basis. These people are more than just caregivers, they are family. Thank you all that came out so we could honor you. Next year we will need a bigger table. 😊
12/02/2023
I had a great time finishing up Project Sebastian's second round of the rare compassionate program. This was so important as a Rare family is paired up with a medical student. The purpose of this is to share insight, so that these new doctors can understand what we rare families are going through before, during, and after diagnosis. Hopefully, these new recruits will understand what actually happens with newly diagnosed families that cannot be taught in schoolbooks. I was proud to have several conversations with who demonstrated to me his understanding of what is needed. Siamrut will make a great doctor one day as he already has empathy and a drive to really understand what is missing in today's medical world. I wish him the best. I will miss our talks.
11/28/2023
Tomorrow is
We at Project Sebastian are grateful to be here. Please take a moment to visit www.projectsebastian.org and read how we participate in and donate if you can.
Rare diseases | Project Sebastian We at Project Sebastian give support and hope to families affected by a child with a rarediseases. We are here to provide education, therapies, and counseling.
Happy Thanksgiving to all the rare families out there!! Being present is a gift! Today we get to be grateful for another holiday with our rare kids and adults! Take a moment to understand this. There are families that will never get these special moments again. Be kind and reach out to them and offer your shoulder.
May God bless each one of us and today let us be reminded of how good we have it.
11/19/2023
We had a special visit from some of the Scarpetta clan last night! Christina and Cloe spent a couple of hours with us and Sebastian loved it. I gotta say I did too! Thanks for stopping by guys!! We love you!! Enjoy San Diego girls! .scarpetta Christina Scarpetta Brad Scarpetta
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