What Do I Do Now?
If you are here because of a loved one or friend, we are so very sorry and are here to help in any way we can. We know exactly what you are going through. We hope this section will help you get through this journey. Through our experiences, and those of others, we have compiled a list of resources and websites that helped us immensely. If you have found any other resources that might help others, please pass them along to us at firstname.lastname@example.org.
- Alpers Awareness: You are here because you somehow found us. We are here to help you in any way we can. Please contact us for help at email@example.com
- Courtagen-Genetic Testing Made Simple: Courtagen is committed to helping physicians, families, and children suffering with neurological disorders. Test results provide your doctor with genetic information to help diagnose disease and guide treatment decisions. Genetic testing can lead to positive changes or, in some cases, major improvements in a child’s quality of life. They also offer a range of financial assistance.
- CaringBridge: This wonderful organisation offers personal, protected sites making it easy to post health updates during any type of health event. Family and friends visit the site to stay informed and leave supportive messages.
- SupportPlanner: CaringBridge also offers this extremely helpful service that allows coordination of:
- Making and bringing meals
- Providing childcare during appointment times
- Caring for pets
- Doing household chores
- Offering regular breaks for a caregiver
- mealTrain: mealTrain is a free solution that simplifies the organization of giving and receiving meals. By allowing the giving party to take into account the recipient’s preferred meal times, food preferences, and available days, the site helps ensure that the recipient gets the meals they enjoy on the days that are most helpful.
- GiveForward: A GiveForward fundraising webpage empowers friends, family, and other caring folks to send love and financial support to patients as they navigate a medical crisis. Start a GiveForward page today and ease the burden of your loved one’s out-of-pocket medical expenses.
- Government Programs and Resources: There is a growing list of United States Government programs and plans aimed at helping Alpers kids and their families. As Alpers is on the List of Compassionate Allowances Conditions, we highly recommend applying for financial aid under the Social Security Compassionate Allowance Program.
Government Programs and Resources
As of August 11, 2012, Alpers Syndrome is now part of the Social Security Compassionate Allowance Program. The Compassionate Allowances initiative identifies claims where the nature of the applicant’s disease or condition clearly meets the statutory standard for disability. With the help of sophisticated new information technology, the agency can quickly identify potential Compassionate Allowances and then quickly make decisions. More information about this very helpful program can be found at Social Security Compassionate Allowance Program.Through the Social Security Disability Insurance program, Alpers kids and families may qualify for additional funds to help with expenses. For more information please visit Social Security Disability Help.
- Veronica’s CaringBridge.org site follows the last 16 days of her life at The Children’s Hospital Colorado, in Denver
- What are Mitochondria?
- Genetics & Inherited Metabolic Diseases at The Children’s Hospital Colorado
- Mitochondrial Disease Action Committee
- United Mitochondrial Disease Foundation
- National Institute of Neurological Disorders and Stroke
- About Alpers Syndrome
- Alpers Syndrome on Wikipedia
- What is the POLG1 Gene?
- A Diagram of Known POLG1 Genetic Mutations
and The Human DNA Polymerase Gamma Mutation Database
- 6 Myths About Grieving