PATIENT ASSISTANCE GRANT PROGRAM
Raising a child is expensive but raising a child with special medical needs is VERY expensive and we would like to help.
The FamilieSCN2A Foundation sets aside a limited amount of funds each year to offer small grants to patients with SCN2A Disorders for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs.
This program is open to all patients worldwide who meet the program requirements. The program closes each year on December 1st or once funds are depleted for that session. Any remaining funds are rolled over, with the program opening each year on International SCN2A Awareness Day, February 24.
The 2020 Patient Assistance Grant (PAG) program is now open
Letters of Gratitude From SCN2A Families
"My family and I would like to thank our donors for their thoughtful gift. During this devastating time they have helped shed some light for SCN2A families. Given Charlotte’s condition I made the decision to keep her out of my small business (when it was still allowed to be open). This led to extra challenges trying to run my business yet keep her safe. During these scary times you have given us hope! Your generosity has not gone unnoticed. Thank you for thinking of our special SCN2A children! And, thank you again for helping my family.
-- Thank you,
The Robbins family "
"I wanted to take some time and thank the SCN2a foundation for not only offering the covid19 financial relief grant, but also approving the application for assistance to my family. I became ill March 14th, they didn’t have testing for everyone at that time so I was told to stay home and seek medical attention if it’s needed. During this time our schools cancelled classes, my partner was laid off due to COVID, and I was unable to go to work as a nurse due to having symptoms. My son still has daily seizures and I’m typically his main caregiver, so it became very hard for my partner to take my place in trying to balance his care. On March 23rd I couldn’t take it anymore and had to go to the hospital, by that time both of my lungs had partially collapsed. Since then I’ve been given medication and oxygen to help keep me home as long as possible, but even today my O2 continues to desat. I’m on my second antibiotic and now school has closed for the remainder of the year. Throughout all this my biggest worry wasn’t my health, it was trying to keep my family financially ok. This grant took some of the burden I had on my shoulders weighing me down so I could actually focus on getting myself better. Thank you so much for all you continue to do for our SCN2a kids and for helping our families through a very unstable time."
"About one year before this COVID-19 pandemic took place, our son was born and within 36hours of his life he was having back to back seizures. After understanding he was diagnosed with SCN2a and getting adjusted to our new lives not only as first time parents, but as special needs parents we are now struck with this epidemic right before we are planning to bring our son to his medical team’s seating clinic. A neuro-typical one year old is usually working on walking, yet at this point our son is still working on sustained head control. He’s growing out of his infant bath tubs and infant car seats and we can’t get to the Seating Clinic to start the process with insurance on getting him a seat for his size. Thanks to the FamilieSCN2A Foundation COVID-19 Financial Relief Grant, we’re grateful to say we can get our son the bath seat he needs to make his quality of life better while we are quarantined until we can get him to the seating clinic. Although we wish we met these families via different circumstances, we’re so thankful to be a part of such a caring community!"
"This was such a HUGE blessing for us as Isabelle has many supplies needed that her insurance doesn't cover. With this Coronavirus scaring everyone, having to buy extra food and supplies to disinfect with has drained our little social security check. Without this blessing we would not have been able to order her extra supplies in case it comes to where things aren't being shipped. We never know from day to day what each day will bring. Praying for all our SCN2A family and the rest of the world too. Be safe. A huge thank you to our SCN2A donors for helping in a time of need."
"Thank you to the SCN2A Family for providing me transportation back and forth and for food while still being at the hospital with my baby. It has been a long 2 months. She had surgery on Thursday for a GTube. So hopefully things are looking up so we can go home soon. Again, thank you for your generosity. I pray each and every one of your stays safe and well during this pandemic. God Bless you."
"I can not thank you enough.The money went through. I am in complete ahhh of this grant. This act of kindness was so unexpected. I just received a call from my boss stated I needed to be laid off at least for the next month. Which was so unexpected due to typically being an essential employee.
However, I have great faith and my boss was very kind and reassuring that we will get back on track as soon as possible.This definitely came at the perfect time.. I want to express how much the SCN2A family has supported me and so many others daily. Just knowing you are all there and consistency going above and beyond with all the research and loving support is truly a blessing. This wonderful deed will not go unnoticed to our family."
-- Much love,
The Turano Family
"Words cannot express how grateful we are to the FamilieSCN2A Foundation. My husband has been out of work due to the COVID-19 health crisis for several weeks and probably will be for several more. The FamilieSCN2A COVID-19 Relief Grant will allow us to continue to pay bills during this uncertain time."
"I want to thank you very much for the generous donation that you gave my family. My daughter, Gabriella, was diagnosed with SCN2A when she was 3 months old. She was experiencing about 80 grand-mal seizures a day from 3 weeks to 18 months old . After trying many anti seizure medicines, I, along with our neurologist. decided to try Haleigh’s Hope Cannabis Oil and thankfully she had a great response. She is currently 5 years old and has been seizure free for 3 years.
I work full time in the restaurant industry. Due to the recent pandemic our country is facing, I am laid off work. I was very worried about Gabriella’s medical expenses due to this lay off. The donation was able to pay for four months worth of her Haleigh Hope’s cannabis oil (insurance does not cover this medication) and help with her distance learning by providing her with a laptop. I want to thank you guys again for lifting a huge burden off my shoulder."
-- Always, Gabriella’s Mom
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Sometimes getting a diagnosis can be the hardest part of the journey. There are resources available if you think you or your child may have SCN2A.
Click the following resources to help you get closer to a diagnosis.
Show Me Your Genes is dedicated to raising awareness and funding for genetic testing and research, with a goal to accelerate proper diagnosis and effective life style plans for special needs families.
Show Me Your Genes was founded to make the process of diagnosing special needs children less stressful for families.
Our goal is to raise awareness about how important genetic testing and the Whole Exome Sequencing test is to receive a proper diagnosis. We will raise money to provide funds to families for the genetic testing when insurance will not cover the test. Our goal is to eventually have the insurance companies pay for this testing for special needs children. In addition we will also provide grants to other qualifying non profits who are in need of funding for research in genes associated with special needs children, teens and adults.
Funding genetic testing to find a proper diagnosis to create the right solution. Visit showmeyourgenes.org
If you or a loved one has a rare and genetically undiagnosed childhood-onset condition, join a patient-driven research study to discover the genes underlying your family's rare disease.
More than half of the genes underlying rare disease remain undiscovered. Donating your data enables us to learn more about the genetic variants that make families like yours unique.
Join the research community. The Rare Genomes Project is supported by The Broad Institute of MIT and Harvard, in partnership with patients and advocates like you. When you share your genetic data and your story, we can use next-generation sequencing to learn more about the genetic causes of ultra-rare diseases.
Count Me In! Visit raregenomes.org
Behind the Seizure™ Program Expansion Helps Speed the Diagnosis of Genetic Epilepsy in Younger Children Experiencing Unprovoked Seizures
--Stoke Therapeutics and Xenon Pharmaceuticals Join Founders BioMarin and Invitae to Offer a No-Cost Epilepsy Gene Panel Testing Program for Children Up to 60 Months Who Have Had an Unprovoked Seizure--