Chelsea's One in a Million Disease
Donation protected
Chelsea Federio, age 34, has been dealing with an excruciating and crippling illness, that has progressed over the course of the last six years, which has prevented her from working as a bone marrow transplant nurse. At long last, we finally have a confirmed diagnosis and treatment plan! Some of you may know the details regarding her journey to this point, but many of you may not. We are here now to advocate for this dynamic human being who desires to bring awareness to this mysterious and violent disease. Her goal is to advocate for early diagnosis for others. Thank you for reading Chelsea’s story.
Chelsea has been diagnosed with an extraordinarily rare neuromuscular, autoimmune disease called Stiff Person Syndrome (SPS). And although a sense of relief came upon us all when a real, clear diagnosis occurred, at that moment, clarity struck- “This is when the hard work really begins!” Now is the time when Chelsea needs her loved ones the most, both to support her through this long road of treatment and also to assist her in being able to afford her life-saving care. Since a toddler, Chelsea has showcased a desire to persevere and stand up for what is right. Thirty years later, she remains that same human being. Chelsea is strong-willed and determined to fight- for herself and for everyone out there- attempting to assemble the puzzle pieces that make up Stiff Person Syndrome. Hopelessness and giving up are not an option for her! Thank you for continuing to read this proposal and for your thoughtfulness and consideration in helping her fight this battle and support her insurmountable endeavor.
For over six years now, Chelsea, with relentless perseverance, has battled the unknown. Below is a summary of Chelsea's history of misdiagnosis and failed treatments. We are sharing this information with all of you in hopes that someone else out there might come to the realization, "This sounds like my story!" And in that moment, that person may realize they need to look into their diagnosis and ask the right questions of their medical professionals. We, after years of struggle and excruciating self-advocacy, wish for every individual to become his/her best advocate, just as Chelsea has been. Only this unabating determination led, eventually, to her extremely rare diagnosis.
Please allow me to explain why we are raising money for Chelsea. At this time, she is in need of home care in San Diego, CA, flights and hotel stays back and forth to Johns Hopkins Hospital in Baltimore, MD, once per quarter, an adjustable bed, a wheelchair and walker so that she can maintain independence, co-pays for her in-home infusions, aqua therapy, massages, Uber rides to various doctor’s appointments, and so much more! Imagine needing all of this care just to then be presented with your mounting medical fees. Add to this stress the intense desire to work the self-fulfilling job she had, but not being able to due to debilitating physical impairment since 2014. Now you have a glimpse of Chelsea’s world.
Friends and strangers with whom we may never cross paths, if you have anything that you can spare, any connections who may be able to help raise awareness with us, or even the ability to pass this GFM on to others, it would be greatly appreciated at this time! This is the most critical time in Chelsea's care. Please continue to read the below history for a better understanding of SPS and what Chelsea is up against.
Chelsea's Backstory:
Since June of 2013, Chelsea has been plagued with debilitating pain, blinding headaches, and charley horse-like spasms and contractions, beginning long ago in her neck and that now have spread throughout her entire body. As you can imagine, this has turned her family’s lives upside down. Daily care, endless worry, and unimaginable pain are nothing new for her spouse, Alex, who sticks by her side as her primary caregiver and continues to provide endless support.
For the first two years, she had rotating orthopedic diagnoses, such as cervical disc bulges, which resulted in many unnecessary and invasive spinal procedures. For the following four years, she was misdiagnosed with a rare and painful movement disorder called Cervical Dystonia. After her supposed Dystonia started to spread throughout her body, and the recommended Botox injections ceased to work effectively. Her neurologist decided to switch her treatment over to Myobloc, for what we hoped would provide much more relief for her constant, extreme pain and debilitating decrease in function. Sadly, this was not the case; instead, Chelsea contracted SYSTEMIC botulism rather than the much-needed relief for which she had hoped. This matured into a three-week-long hospital stay when the toxin spread leaving parts of her partially paralyzed. Her blood was so poisonous with botulism that, when the CDC (Center for Disease Control) injected five rats with her blood for testing, it killed all of them. Luckily for Chelsea, the CDC took immediate action to save her life by flying in the anti-toxin from Los Angeles.
The silver lining to all this occurring was that she then felt the need to move on to a new hospital system for her care. Unfortunately, with the anti-toxin for botulism given, Chels is now immunized from it, and she could no longer receive the standard treatment for Dystonia, Botox injections. That meant that she was facing potential brain surgery, called deep brain stimulation (DBS), as her only course of action. Both of the surgeons, who she consulted with, approved her for the surgery. Luckily, she did not settle for this approval. Before going through with surgery, she met with a new movement disorder neurologist for the first time. At that first appointment, her new neurologist ordered ample testing in an attempt to rule out all other possible diagnoses. These tests included a simple blood test for any GAD-65 antibodies that may be present in her bloodstream. Dr. Houser is now Chelsea’s San Diego-based neurologist who was astute and thorough enough to order these tests, which ended up saving Chelsea from having unnecessary brain surgery.
As it turns out, her GAD-65 test came back positive, meaning that these antibodies WERE in her bloodstream. GAD-65 antibodies show up when a patient has one of only a handful of diseases, such as type 1 diabetes or the extremely rare, SPS, which matched all of Chelsea’s symptoms to a tee. For reference, normal people have anywhere from 0-5 of these antibodies in their bloodstream. The results were greater than 250 for Chelsea, but a definitive count was not ordered. SPS, or Stiff Person Syndrome is much more serious and far more painful than the silly name it was given. (Ask Chelsea her thoughts about this! She’s starting a campaign to get it renamed with something Latin or far more sinister-sounding. I vote “Chelsea Federio Disease” (much scarier, right? ;-P).
So what do these antibodies mean? Well, no one can really say for certain because SPS is so rare. One in a million have developed this disease. There are only 7,000 confirmed cases in the roughly 7 billion people alive today. Unfortunately for Chelsea and others suffering, not much has been determined regarding the origin of SPS or a clear standard treatment plan. What they do know is that GAD-65 antibodies, at this extremely high level, decrease the amount of GABA produced by the brain. GABA controls the central nervous system. If Chelsea has a low amount of GABA due to the GAD-65 antibodies attacking them, then that will increase the excitability of her brain and central nervous system. This is what causes the symptoms we see and don’t see.
Because of its rarity, her new neurologist was unable to diagnose her with SPS with certainly. In actuality, only a handful of doctors in the country have the capability of doing so. This meant that, in order for Chelsea to seek treatment for her illness, she needed first to meet with one of those very rare doctors for a confirmed diagnosis. Being the good nurse that she is, and with extensive research, she came across the country’s leading SPS Guru, Dr. Scott Newsome, at Johns Hopkins Hospital in Baltimore. After sending in her medical records, Dr. Newsome accepted her as a patient. They set up the soonest possible appointment for her, which would not occur until June, SEVEN months later! After what felt like limbo for those seven months, at last, the day came when it was time to go to Hopkins. Together with her mother, they flew from the west coast to Baltimore for what was meant to be a weeklong stay. Her east coast ordeal actually turned into an eight weeklong stay!
The itinerary was to arrive Thursday, relax Friday, have her cousin, Jeff, wheelchair her around the Smithsonian on Saturday, recover on Sunday, and then have a lumbar puncture and other tests at Hopkins on Monday. On Tuesday she was to have an EMG/nerve conduction study and consult with a Dystonia Doctor. Her final day at Hopkins was to end with a consult with Dr. Newsome for a confirmed diagnosis. Chelsea’s disease, however, had other plans. Instead, she spent Monday, June 17th, in a 9-hour back bending, throat-closing, excruciating full-body spasm. Please see the photo from when it was just beginning as our cover image. Due to the severity of her condition when she is in full spasm, no photos have been taken of her at those times. Her spasms were so bad that she had to go to the emergency room. Because no one in that emergency room knew Chelsea or her medical history, and she hadn’t yet been seen by any Hopkins doctors, it took five hours before she was able to start receiving the treatment and muscle relaxers that she desperately needed. The whole ordeal was traumatic, to say the least! She thought that her spine was going to snap. Not figuratively, literally, SPS can cause fractures and dislocations due to extreme muscle contractions and hyperextensions. Her friends and family are nearly as traumatized as she is when these episodes occur. Seeing a loved one unwillingly contort into extreme positions that make them cry out in agony that their spine is about to snap is heartbreaking.
The next day she met with Dr. Newsome who ordered an abundance of lab tests including another GAD-65 test. This time, however, they tested for the specific quantity of antibodies in her system. When the results came back, they ascertained that she had more than 256,000 IU/mL in her bloodstream... which is the top of the scale.
The following day, she proceeded with a lumbar puncture under sedation. The result was another back-bending spasm so intense that the high amounts of sedatives given were ineffective causing Chelsea to be awake for the entirety of the procedure. This caused complications severe enough for her to be admitted into the hospital.
The recipe for diagnosing this complicated disease includes various blood tests (including a test showing elevated GAD-65 antibodies), a lumbar puncture (positive for GAD-65 antibodies in her spinal fluid, which occurs in only 40% of those with SPS), and EMG/NCS. All of the results of these tests for Chelsea were consistent with SPS, and so Dr. Newsome felt comfortable confirming her diagnosis. This was HUGE because it meant that Chelsea could, at long last, start treatment.
Since Dr. Newsome is the best SPS doctor in the country and conducts research and clinical trials, Chelsea wanted to follow his treatment plan for her future SPS care. That treatment plan included a complete overhaul of her oral medications with a strict 24-hour schedule of meds taken every couple of hours, as well as oral and intramuscular injections of rescue medications to administer in times of crisis, and high-dose IV immunoglobulin therapy (IVIG) every four weeks for five days (11-hours per day). These treatments were started immediately while in the hospital based on her crisis state and will continue indefinitely.
On day three, Chelsea’s brain began to swell as a reaction to the IVIG when she developed aseptic meningitis. She was rushed to the neuro-ICU where she was given massive amounts of IV steroids in hopes of bringing the brain swelling down. During that time, her mother was being prepared for the possibility that part of Chelsea’s skull would need to be removed to allow the brain to have room to swell. Fortunately, the high dose-intensive steroids proved to be a success, bringing the swelling down so that she was able to complete the five days of her IVIG treatment.
Chelsea spent a total of fifteen days in the hospital, mostly in the neuro-ICU. Because of her severe reaction, Dr. Newsome decided that her second round of treatment needed to be administered by familiar doctors at Johns Hopkins rather than at home in San Diego. He needed to be certain that this was a one-time reaction and that she would be safe. So, in the interim, Dr. Newsome cleared them to travel within a safe distance and stay with family on the east coast. A few weeks later, they returned to Hopkins for round two of the IVIG. This time, all treatments were successfully completed with no severe reactions, YAY! After a few days of recovery, this meant that Chelsea could go home to Alex, PJ, and Fin!
Where do we go from here:
As you might imagine, the ability for Chelsea to live a healthy and productive “day to day” has been greatly inhibited. With all brutal honesty, over the course of this last year, her disease has noticeably progressed and her physical condition has shown signs of acute degradation. Currently, she is hardly able to perform even the simplest of tasks for herself. This means that she is in need of constant care, including home visits from a nurse, physical therapist, occupational therapist, speech pathologist, caregiver, and IVIG from a home infusion nurse. This level of in-home care will continue until approximately November, when she anticipates traveling back to Johns Hopkins, to evaluate if this is the correct treatment path for her. We anticipate that all treatments will resume after that point.
SPS is progressive with no cure.
The treatments listed are to slow down the disease process, but ultimately, she will deteriorate. So here’s what we are raising money for:
-insurance costs
-20% co-pay for her every four-week IVIG sessions
-medications
-medical devices and equipment (wheelchair, walker)
-adjustable bed
-travel to Baltimore up to four times per year
-caregiver while Alex is at work
-aqua therapy
-rides to and from appointments
-massages
-medical procedures
-monthly house cleaner
Your support and love will not only help Chelsea, but it will greatly improve the quality of life for her fiancé and life partner of 10 years, Alex. He works full-time, he cooks and cleans, he provides care to their two dogs, and he maintains as Chelsea’s primary caregiver. Please try to imagine this overwhelming task unloaded on to you. Not only does he have to tend to ordinary life’s everyday stresses, but he has to function productively and positively while providing basic, daily, self-care needs for Chelsea… All while watching the love of his life suffer day in and day out.
I want to help more, I live out-of-town, or I don’t have money to give... How can I help?
· Please reach out to Chels with support and love. Being this sick and isolated is HARD… to put it mildly. Visits from friends and family are also welcome.
· Help spread the word about fundraising. About SPS and the need for its early Diagnosis. Our goal is to just help one person out there figure out what this is before the 6-8 year mark (which is the average length of time it takes for diagnosis of SPS today)!
· Please let us know if you have any connections that could help us spread the word- with the media, or for fundraising.
· Do you know anyone with SPS that you could connect Chels with?
· Are you ever free to help with emergency rides or nutritious meals?
· If you have any ideas for us or guidance, please let me know how we can improve our GoFundMe, raise awareness and money, or anything else we might be missing.
· If you know of any businesses or foundations that can help, please let us know, or share Chelsea’s story with them!
· Write into The Ellen Show, and ask them to share Chelsea’s story! (My addition)
Chelsea has been diagnosed with an extraordinarily rare neuromuscular, autoimmune disease called Stiff Person Syndrome (SPS). And although a sense of relief came upon us all when a real, clear diagnosis occurred, at that moment, clarity struck- “This is when the hard work really begins!” Now is the time when Chelsea needs her loved ones the most, both to support her through this long road of treatment and also to assist her in being able to afford her life-saving care. Since a toddler, Chelsea has showcased a desire to persevere and stand up for what is right. Thirty years later, she remains that same human being. Chelsea is strong-willed and determined to fight- for herself and for everyone out there- attempting to assemble the puzzle pieces that make up Stiff Person Syndrome. Hopelessness and giving up are not an option for her! Thank you for continuing to read this proposal and for your thoughtfulness and consideration in helping her fight this battle and support her insurmountable endeavor.
For over six years now, Chelsea, with relentless perseverance, has battled the unknown. Below is a summary of Chelsea's history of misdiagnosis and failed treatments. We are sharing this information with all of you in hopes that someone else out there might come to the realization, "This sounds like my story!" And in that moment, that person may realize they need to look into their diagnosis and ask the right questions of their medical professionals. We, after years of struggle and excruciating self-advocacy, wish for every individual to become his/her best advocate, just as Chelsea has been. Only this unabating determination led, eventually, to her extremely rare diagnosis.
Please allow me to explain why we are raising money for Chelsea. At this time, she is in need of home care in San Diego, CA, flights and hotel stays back and forth to Johns Hopkins Hospital in Baltimore, MD, once per quarter, an adjustable bed, a wheelchair and walker so that she can maintain independence, co-pays for her in-home infusions, aqua therapy, massages, Uber rides to various doctor’s appointments, and so much more! Imagine needing all of this care just to then be presented with your mounting medical fees. Add to this stress the intense desire to work the self-fulfilling job she had, but not being able to due to debilitating physical impairment since 2014. Now you have a glimpse of Chelsea’s world.
Friends and strangers with whom we may never cross paths, if you have anything that you can spare, any connections who may be able to help raise awareness with us, or even the ability to pass this GFM on to others, it would be greatly appreciated at this time! This is the most critical time in Chelsea's care. Please continue to read the below history for a better understanding of SPS and what Chelsea is up against.
Chelsea's Backstory:
Since June of 2013, Chelsea has been plagued with debilitating pain, blinding headaches, and charley horse-like spasms and contractions, beginning long ago in her neck and that now have spread throughout her entire body. As you can imagine, this has turned her family’s lives upside down. Daily care, endless worry, and unimaginable pain are nothing new for her spouse, Alex, who sticks by her side as her primary caregiver and continues to provide endless support.
For the first two years, she had rotating orthopedic diagnoses, such as cervical disc bulges, which resulted in many unnecessary and invasive spinal procedures. For the following four years, she was misdiagnosed with a rare and painful movement disorder called Cervical Dystonia. After her supposed Dystonia started to spread throughout her body, and the recommended Botox injections ceased to work effectively. Her neurologist decided to switch her treatment over to Myobloc, for what we hoped would provide much more relief for her constant, extreme pain and debilitating decrease in function. Sadly, this was not the case; instead, Chelsea contracted SYSTEMIC botulism rather than the much-needed relief for which she had hoped. This matured into a three-week-long hospital stay when the toxin spread leaving parts of her partially paralyzed. Her blood was so poisonous with botulism that, when the CDC (Center for Disease Control) injected five rats with her blood for testing, it killed all of them. Luckily for Chelsea, the CDC took immediate action to save her life by flying in the anti-toxin from Los Angeles.
The silver lining to all this occurring was that she then felt the need to move on to a new hospital system for her care. Unfortunately, with the anti-toxin for botulism given, Chels is now immunized from it, and she could no longer receive the standard treatment for Dystonia, Botox injections. That meant that she was facing potential brain surgery, called deep brain stimulation (DBS), as her only course of action. Both of the surgeons, who she consulted with, approved her for the surgery. Luckily, she did not settle for this approval. Before going through with surgery, she met with a new movement disorder neurologist for the first time. At that first appointment, her new neurologist ordered ample testing in an attempt to rule out all other possible diagnoses. These tests included a simple blood test for any GAD-65 antibodies that may be present in her bloodstream. Dr. Houser is now Chelsea’s San Diego-based neurologist who was astute and thorough enough to order these tests, which ended up saving Chelsea from having unnecessary brain surgery.
As it turns out, her GAD-65 test came back positive, meaning that these antibodies WERE in her bloodstream. GAD-65 antibodies show up when a patient has one of only a handful of diseases, such as type 1 diabetes or the extremely rare, SPS, which matched all of Chelsea’s symptoms to a tee. For reference, normal people have anywhere from 0-5 of these antibodies in their bloodstream. The results were greater than 250 for Chelsea, but a definitive count was not ordered. SPS, or Stiff Person Syndrome is much more serious and far more painful than the silly name it was given. (Ask Chelsea her thoughts about this! She’s starting a campaign to get it renamed with something Latin or far more sinister-sounding. I vote “Chelsea Federio Disease” (much scarier, right? ;-P).
So what do these antibodies mean? Well, no one can really say for certain because SPS is so rare. One in a million have developed this disease. There are only 7,000 confirmed cases in the roughly 7 billion people alive today. Unfortunately for Chelsea and others suffering, not much has been determined regarding the origin of SPS or a clear standard treatment plan. What they do know is that GAD-65 antibodies, at this extremely high level, decrease the amount of GABA produced by the brain. GABA controls the central nervous system. If Chelsea has a low amount of GABA due to the GAD-65 antibodies attacking them, then that will increase the excitability of her brain and central nervous system. This is what causes the symptoms we see and don’t see.
Because of its rarity, her new neurologist was unable to diagnose her with SPS with certainly. In actuality, only a handful of doctors in the country have the capability of doing so. This meant that, in order for Chelsea to seek treatment for her illness, she needed first to meet with one of those very rare doctors for a confirmed diagnosis. Being the good nurse that she is, and with extensive research, she came across the country’s leading SPS Guru, Dr. Scott Newsome, at Johns Hopkins Hospital in Baltimore. After sending in her medical records, Dr. Newsome accepted her as a patient. They set up the soonest possible appointment for her, which would not occur until June, SEVEN months later! After what felt like limbo for those seven months, at last, the day came when it was time to go to Hopkins. Together with her mother, they flew from the west coast to Baltimore for what was meant to be a weeklong stay. Her east coast ordeal actually turned into an eight weeklong stay!
The itinerary was to arrive Thursday, relax Friday, have her cousin, Jeff, wheelchair her around the Smithsonian on Saturday, recover on Sunday, and then have a lumbar puncture and other tests at Hopkins on Monday. On Tuesday she was to have an EMG/nerve conduction study and consult with a Dystonia Doctor. Her final day at Hopkins was to end with a consult with Dr. Newsome for a confirmed diagnosis. Chelsea’s disease, however, had other plans. Instead, she spent Monday, June 17th, in a 9-hour back bending, throat-closing, excruciating full-body spasm. Please see the photo from when it was just beginning as our cover image. Due to the severity of her condition when she is in full spasm, no photos have been taken of her at those times. Her spasms were so bad that she had to go to the emergency room. Because no one in that emergency room knew Chelsea or her medical history, and she hadn’t yet been seen by any Hopkins doctors, it took five hours before she was able to start receiving the treatment and muscle relaxers that she desperately needed. The whole ordeal was traumatic, to say the least! She thought that her spine was going to snap. Not figuratively, literally, SPS can cause fractures and dislocations due to extreme muscle contractions and hyperextensions. Her friends and family are nearly as traumatized as she is when these episodes occur. Seeing a loved one unwillingly contort into extreme positions that make them cry out in agony that their spine is about to snap is heartbreaking.
The next day she met with Dr. Newsome who ordered an abundance of lab tests including another GAD-65 test. This time, however, they tested for the specific quantity of antibodies in her system. When the results came back, they ascertained that she had more than 256,000 IU/mL in her bloodstream... which is the top of the scale.
The following day, she proceeded with a lumbar puncture under sedation. The result was another back-bending spasm so intense that the high amounts of sedatives given were ineffective causing Chelsea to be awake for the entirety of the procedure. This caused complications severe enough for her to be admitted into the hospital.
The recipe for diagnosing this complicated disease includes various blood tests (including a test showing elevated GAD-65 antibodies), a lumbar puncture (positive for GAD-65 antibodies in her spinal fluid, which occurs in only 40% of those with SPS), and EMG/NCS. All of the results of these tests for Chelsea were consistent with SPS, and so Dr. Newsome felt comfortable confirming her diagnosis. This was HUGE because it meant that Chelsea could, at long last, start treatment.
Since Dr. Newsome is the best SPS doctor in the country and conducts research and clinical trials, Chelsea wanted to follow his treatment plan for her future SPS care. That treatment plan included a complete overhaul of her oral medications with a strict 24-hour schedule of meds taken every couple of hours, as well as oral and intramuscular injections of rescue medications to administer in times of crisis, and high-dose IV immunoglobulin therapy (IVIG) every four weeks for five days (11-hours per day). These treatments were started immediately while in the hospital based on her crisis state and will continue indefinitely.
On day three, Chelsea’s brain began to swell as a reaction to the IVIG when she developed aseptic meningitis. She was rushed to the neuro-ICU where she was given massive amounts of IV steroids in hopes of bringing the brain swelling down. During that time, her mother was being prepared for the possibility that part of Chelsea’s skull would need to be removed to allow the brain to have room to swell. Fortunately, the high dose-intensive steroids proved to be a success, bringing the swelling down so that she was able to complete the five days of her IVIG treatment.
Chelsea spent a total of fifteen days in the hospital, mostly in the neuro-ICU. Because of her severe reaction, Dr. Newsome decided that her second round of treatment needed to be administered by familiar doctors at Johns Hopkins rather than at home in San Diego. He needed to be certain that this was a one-time reaction and that she would be safe. So, in the interim, Dr. Newsome cleared them to travel within a safe distance and stay with family on the east coast. A few weeks later, they returned to Hopkins for round two of the IVIG. This time, all treatments were successfully completed with no severe reactions, YAY! After a few days of recovery, this meant that Chelsea could go home to Alex, PJ, and Fin!
Where do we go from here:
As you might imagine, the ability for Chelsea to live a healthy and productive “day to day” has been greatly inhibited. With all brutal honesty, over the course of this last year, her disease has noticeably progressed and her physical condition has shown signs of acute degradation. Currently, she is hardly able to perform even the simplest of tasks for herself. This means that she is in need of constant care, including home visits from a nurse, physical therapist, occupational therapist, speech pathologist, caregiver, and IVIG from a home infusion nurse. This level of in-home care will continue until approximately November, when she anticipates traveling back to Johns Hopkins, to evaluate if this is the correct treatment path for her. We anticipate that all treatments will resume after that point.
SPS is progressive with no cure.
The treatments listed are to slow down the disease process, but ultimately, she will deteriorate. So here’s what we are raising money for:
-insurance costs
-20% co-pay for her every four-week IVIG sessions
-medications
-medical devices and equipment (wheelchair, walker)
-adjustable bed
-travel to Baltimore up to four times per year
-caregiver while Alex is at work
-aqua therapy
-rides to and from appointments
-massages
-medical procedures
-monthly house cleaner
Your support and love will not only help Chelsea, but it will greatly improve the quality of life for her fiancé and life partner of 10 years, Alex. He works full-time, he cooks and cleans, he provides care to their two dogs, and he maintains as Chelsea’s primary caregiver. Please try to imagine this overwhelming task unloaded on to you. Not only does he have to tend to ordinary life’s everyday stresses, but he has to function productively and positively while providing basic, daily, self-care needs for Chelsea… All while watching the love of his life suffer day in and day out.
I want to help more, I live out-of-town, or I don’t have money to give... How can I help?
· Please reach out to Chels with support and love. Being this sick and isolated is HARD… to put it mildly. Visits from friends and family are also welcome.
· Help spread the word about fundraising. About SPS and the need for its early Diagnosis. Our goal is to just help one person out there figure out what this is before the 6-8 year mark (which is the average length of time it takes for diagnosis of SPS today)!
· Please let us know if you have any connections that could help us spread the word- with the media, or for fundraising.
· Do you know anyone with SPS that you could connect Chels with?
· Are you ever free to help with emergency rides or nutritious meals?
· If you have any ideas for us or guidance, please let me know how we can improve our GoFundMe, raise awareness and money, or anything else we might be missing.
· If you know of any businesses or foundations that can help, please let us know, or share Chelsea’s story with them!
· Write into The Ellen Show, and ask them to share Chelsea’s story! (My addition)
Organizer and beneficiary
Tess Donaldson
Organizer
San Diego, CA
Chelsea Federio
Beneficiary
