Search Results

Listen to all the episodes on Spotify Subscribe to the Youtube channel Podcast Video Channel Name Play Video Play Video 00:23 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:29 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:31 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:23 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:29 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:31 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Load More Episode #1: Misdiagnosed! With guest Richard Sperry In this episode, Our guest is Richard Sperry who was misdiagnosed with ALS. We will take you through Richard's long journey of getting diagnosed, how he got a new diagnosis of MMN, and what he has chosen to do with his knowledge from his experience. Episode #2: ALS and the Wild Wild West of Medicine with Neil Olson In this episode, Lisa and McFinn are joined by Neil Olson, whose father lost his battle to ALS in 2020. We will take you through Neil’s journey with his father, the treatments they tried, and what he has chosen to do with the knowledge from his experience. Neil also talks about his advocacy work and efforts with EverythingALS. Episode #3: A Wife's Journey with ALS In this episode, we are joined by Nadia Sethi, who lost her husband, Sundeep Sethi, to ALS in 2021. Nadia talks about Sundeep’s life with ALS and her role as caregiver. We will take you through Nadia’s journey with her husband, how she kept her spirits up, and her champions throughout this experience. Episode #4: In Honor of My Dad, Dan Diaz In this episode, Lisa and McFinn are joined by Sarah Diaz, who lost her father, Dan Diaz, to ALS in 2019. We will take you through Sarah’s journey with her father, what role she took on to help him, and how she honors him today. Sarah is currently studying to be a MD, PhD specializing in neurology. Episode #5: My Journey to CEO of EverythingALS In this episode, we are joined by the CEO and Founder of EverythingALS, Indu Navar. Indu is a Silicon Valley entrepreneur, investor, and an unstoppable force, who started EverythingALS after losing her husband, Peter Cohen, to ALS in 2019. We will take you through Indu’s journey with her husband, the treatments they tried, and her vision for changing the face of ALS. Episode #6: A Brothers Legacy, A Sister’s Love In this episode, we are joined by are joined by Deb Fabricatore, who has been an ALS advocate for many years after losing her younger brother, Johnny, to ALS. We will take you through Deb’s journey with her brother, how she helped him, and how she also kept her spirits up throughout his diagnosis. Deb also talks about how she got involved with EverythingALS and her contribution to our research project. Episode #7: From Tragedy to Triumph with Lisa Deegan In this episode, McFinn Lovere interviews Lisa Deegan, his co-host and team member at EverythingALS. Lisa lost her younger brother John Pecoraro to ALS in 2018. We will take you through Lisa’s journey with her brother, their challenges, and how she became an advocate for ALS. She talks about turning her tragedy into positive actions and now puts her energy into EverythingALS to help others. Episode #8: Why ALS is Unresolved with Murgesh Navar In this episode, Lisa and McFinn are joined by Murgesh Navar, who lost his brother-in-law, Peter Cohen, to ALS in 2019. Murgesh is a Silicon Valley entrepreneur, who is passionate about finding a cure for ALS after seeing his sister, Indu Navar, care for her husband and face the challenges of ALS. Episode #9: ALS Reversal #42 with McFinn Lovere In this episode, Lisa Deegan interviews her co-host McFinn Lovere, who experienced a rare ALS reversal. His case is documented and is studied as ALS reversal #42 at Duke University. We will take you through McFinn’s unique journey with ALS, how he recovered, and what his important role as an ALS advocate on the EverythingALS team means to him. McFinn shares details of his role dedicating his time to helping others throughout their ALS journey. Episode #10: Biomarkers Lead To Results with Dr. Aria Anvar In this episode, Lisa and McFinn are joined by Dr. Aria Anvar, who has been a practicing physician for more than 22+years. Dr. Anvar brings his expertise as Principal Investigator on the EverythingALS Digital Biomarker Voice research study. In this podcast, we will take you through our citizen-driven research to help develop biomarkers as well as commercialized tools for measuring clinical endpoints in ALS. The goal of this research is to expedite clinical trials and eliminate the need for placebos. Dr. Anvar shares his thoughts on changing the paradigm of the ALS condition. Episode #11: Dying Out Loud with Dave Warnock and Bevin Jett In this episode, Lisa and McFinn are joined by Dave Warnock, who was diagnosed with ALS in 2019 and his partner and caregiver, Bevin Jett. We will take you through Dave’s journey of getting a diagnosis and how he spends his limited energy living with ALS with Bevin by his side. Dave and Bevin open up about what they’ve learned and the important role as a caretaker that Bevin plays in Dave’s life. Dave and Bevin also share their advocacy work with EverythingALS, and the importance of connecting with others in this journey. Episode #12: Community and ALS with Shea Harden In this episode, Lisa and McFinn are joined by Shea Harden who is an amazing ALS advocate. We will take you through Shea’s journey with her younger brother, Graham, who just recently passed away from ALS. Shea was instrumental in helping her brother by fundraising, getting disability benefits, finding qualified medical care, and working through the tracheotomy process. Shea opens up about the importance of community, and how to not be afraid of asking for help. Episode #13: Fashionably Fighting ALS with Dr. Richard Bedlack In this episode, McFinn and Lisa are joined by a world renowned neurologist, Dr. Richard Bedlack, professor of neurology at Duke University and director of the Duke ALS Clinic. In his more than 23 years of experience, he has seen over 3,000 patients living with ALS. He is also well known for creating the Duke ALS Clinic in 2001. Episode #14: Stories and Innovation in ALS: Audio Visual Assessments for ALS with David Suendermann-Oeft In this episode, Lisa and McFinn are joined by David Suendermann-Oeft, founder and CEO of Modality.a.i. Modality.ai has developed a conversational software program that can be used remotely by anyone with a computing device that produces accurate metrics of facial and speech behaviors that are predictive of neurological diseases like ALS. Modality is paving the way for more efficient, effective, less costly clinical trials. Episode #15: Passion, Perseverance, and Advocacy with Austen Eadie-Friedmann In this episode, Lisa and McFinn are joined by Austen Eadie-Friedmann, who -- still only in his 30s -- got diagnosed with ALS in 2019. We will take you through his long journey to get diagnosed, his daily challenges, and how he feels the drug development paradigm needs to be changed. He also talks about treatments and the need for access to world-class healthcare for patients. Episode #16: Keep On Ticking with Maggie and Dr. Hira Ahluwalia In this episode, Lisa and McFinn are joined by Dr. Hira Ahluwalia and his wife, Maggie. Hira talks about his journey with ALS, how it took 3.5 years to get a diagnosis, and what he thinks might have contributed to getting this disease. Episode #17: My Dedication to ALS with Dr. Merit Cudkowicz. In this episode, Lisa and McFinn are joined by Dr. Merit Cudkowicz who has over 25+ years working in ALS. Dr. Cudkowicz is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. Episode #18: I can’t Look Away with Allison Bulat. In this episode, Lisa and McFinn are joined by Allison Bulat who lost her first husband, Jeff Pogmiller, to a fast progressing bulbar onset of ALS. We will take you through Allison’s journey along Jeff’s side as his primary caregiver and also her advocacy efforts and how she has not turned away from helping others with this devastating disease. Episode #19: Detoxification & Biochemical Resilience with Dr. Shade In this episode, Lisa and McFinn are joined by Dr. Christopher Shade, who is the CEO and Founder of Quicksilver Scientific. We will take you through what Dr. Shade and Quicksilver Scientific have created to help rid the body and mind of toxins that impair mind and body function. Dr. Shade will walk us through his solutions on restoring a balanced system to help you get rid of toxins and attain a state of wellbeing. Episode #20: ALS has not Defined Us with Lori and Brian Andre. In this episode, Lisa and McFinn are joined by Lori and Brian Andre. Brian has slow progressing ALS, he was diagnosed in 2016 after 2 years of symptoms. They have been married for 40 years and are huge assets to the ALS community, working on community outreach and education for clinical trials with I AM ALS. Episode #21: Pursuit of Happiness with Mayuri and Mayank Saxena In this episode, Lisa and McFinn are joined by Mayuri and Mayank Saxena. Mayuri was diagnosed with ALS 2.5 years after the onset of symptoms, at the young age of 32. Mayuri is joined by her brother Mayank, who has been instrumental throughout her journey even though they are bi-coastal. Episode #22: Nutrition Essentials for ALS In this episode, Lisa and McFinn are joined by Coco Newton, MPH, RD, CNS who is a Registered Dietitian & Certified Nutrition Specialist. Coco works with each individual, helping them to understand their unique circumstances, belief systems, personal/spiritual strengths and challenges. She will tailor a program that more realistically addresses your nutritional needs and expectations. Coco has a lot of passion in working with many people diagnosed with ALS over the years to help them with their nutritional needs. Episode #23: Not Going Quietly with Ady Barkan and Rachael King In this episode, Lisa and McFinn are joined by American healthcare activist and lawyer Ady Barkan. Ady was diagnosed with ALS shortly after the birth of his son Carl, at the young age of 32. He joins us with his wife Rachael King by his side. Rachael is the mother to their two young children, Carl and Willow. She is a professor at UCSB and manages to balance motherhood, working, and being the pillar of strength for their family. Episode #24: Her ALS Story In this episode, Lisa and McFinn are joined by guests Leah Stavenhagen, Sunny Brous and Macey Hoaglund, who all have something in common - they were diagnosed with ALS in their late 20’s. They part of Her ALS Story, which is a group of women all diagnosed with ALS before their 35th birthdays.

Future Events Expert Talk Series Fireside Chats PrimeC - Connecting the Dots Biomarkers, Survival, and the Future of ALS Research Wed, Jun 24 Virtual Event RSVP Citizen Research on July 8th Wed, Jul 08 Virtual Event RSVP Advances in ALS Research & Innovation with Dr. Bryan Traynor Wed, Jul 22 Virtual Event RSVP Citizen Research on Aug 5th Wed, Aug 05 Virtual Event RSVP Citizen Research on Sept 2nd Wed, Sep 02 Virtual Event RSVP Global Collaboration to Disrupt ALS with Dr. David Taylor Wed, Sep 16 Virtual Event RSVP Citizen Research on Sept 30th Wed, Sep 30 Virtual Event RSVP Advances in ALS Research & Innovation with Dr. Ernest Fraenkel Wed, Oct 14 Virtual Event RSVP Advances in ALS Research & Innovation with Dr. Veronique Belzil Wed, Nov 11 Virtual Event RSVP Citizen Research on Nov 25th Wed, Nov 25 Virtual Event RSVP Citizen Research on Dec 23rd Wed, Dec 23 Virtual Event RSVP

Careers Join us to help everyone impacted by ALS participate in Citizen-Driven Research and benefit from Open Innovation. EverythingALS offers satisfying careers for people ready to bring their talent and skills to the fight of finding a cure for ALS. We also offer critically important volunteer opportunities that empower all kinds of people to share their unique gifts to help drive our mission forward Boston Area, Remote Community Engagement Manager Reporting to the Executive Director, we are seeking a Community Engagement Manager with excellent project management and digital communications skills to join our dynamic team. This role is crucial in driving our discovery and engagement with our.. Read More

Privacy Policy EverythingALS is a brand name of Peter Cohen Foundation, a non-profit, 501(c)(3) designated Washington corporation (“we”, “us”, and “our”) is committed to protecting your privacy and personal information that you provide to us when accessing or using our app or website (the “Site”). This privacy policy (this “Policy”) explains how we gather and use the information that we collect during your visit to our App. This Policy may change over time, so please be sure to reread it from time to time. Amendments, modifications or changes to this Policy will be posted at this URL and will be effective when posted. We encourage you to review the Privacy Policy each time you visit this Site, so you are aware of any updates. Your continued use of our Site following the posting of any amendment, modifications or change to this Policy shall constitute your acceptance thereof. If you do not agree with the terms in this Policy, please do not use our Site and do not provide any information to us. Authorized Users Our Site is directed to and is intended for access and use by persons of all ages and is not particularly targeted to certain age group. Personal Data Collected We gather Personal Data and Other Data (as described below). Personal data is information that identifies you or can be used to identify or contact you, e.g., your name, email address, address, or phone number (“Personal Data”). We may need to collect and process Personal Data in order to provide requested information, products or services to you (including the Site) or because we are legally required to do so. Voluntary Disclosure. We may collect Personal Data voluntarily provided by you, including in emails to the Site, online forms, order and registration forms, surveys, promotion participation, phone calls and online chats with our customer service and through other means. Other Means. We may collect information through various other means, including participation at conferences and events, individual introductions, from employers that enroll their employees in our services, and from selected third-party business partners. From time to time, we may also acquire from third parties certain lists containing the names and contact information of individuals who may be interested in our products and services. We ask that you not send us, and you not disclose, any sensitive Personal Data (e.g., social security numbers, political opinions, religion or other beliefs, heal or criminal background or trade union membership) on or through this Site or otherwise to us. Use and Disclosure o f Personal Data We will not use or share your Personal Data without a valid legal basis to do so. Any use or disclosure of Personal Data will be based on a legitimate interest. We use Personal Data for legitimate business purposes, including the following: Fulfillment of Requests. We may use Personal Data about you (a) to deliver products and services to you, (b) provide you with information about products and services you’ve enrolled in, (c) when it is necessary for employees, agents and contractors to operate or maintain the website or to correct a technical problem, and (d) when it is necessary to verify the existence or condition of your account with a other third-party. We will engage in these activities to manage our contractual relationship with you and/or to comply with a legal obligation. Other Communications. From time to time, we may use Personal Data about you to inform you of products, programs, services and promotions that we believe may be of interest to you. Other Business Purposes. We may also use Personal Data about you for other business purposes, such as data analysis (for example, to improve the efficiency of our Site and services), editorial and feedback purposes, providing customer support, customizing and improving the content and layout of the Site, completing business transactions (for example, to confirm content requested is received by users), development of marketing and promotion plans and materials, statistical analysis of user behavior (for example, to understand what parts of the Site are of most interest to users), product development, market research, administering individual accounts. We engage in these activities to manage our contractual relationship with you, to comply with a legal obligation, and/or because we have a legitimate interest. Administrative Communications. We reserve the right to use Personal Data to send to you important information regarding the Site, products, services, your account status, changes to the Site’s terms of use, this Policy, or any other policies, agreements or transactions relevant to your use of the Site, products and/or services. Because this information may be important to your use of the Site, products and/or services, you may not opt-out of receiving such communications. We will engage in this activity to manage our contractual relationship with you and/or to comply with a legal obligation. We may disclose Personal Data for the following legitimate business purposes: Third-Party Service Providers. We may provide Personal Data to third-party service providers, who provide services to us, including but not limited to, data analysis, order fulfillment, payment processing, and other services. We maintain written contracts with these third parties and require that these third parties provide at least the same level of privacy protection and security as required under this Policy. Unless we demonstrate that we are not responsible for violation of this Policy giving rise to damage, we will remain responsible and liable under Privacy Shield Principles if a third-party that we engage to process Personal Data on our behalf does so in a manner inconsistent with the Privacy Shield Principles Affiliate Communications. We may transfer Personal Data among our affiliates to allow our affiliates to contact you regarding products, programs, services and promotions that they believe may be of interest to you, and such affiliates may otherwise use your Personal Data in accordance with this Policy. If you would prefer not to receive marketing communications from us or our affiliates, please see the “opt-out” section below. EverythingALS will be the party responsible for jointly used Personal Data. Strategic Partners and Co-Branded Sites. From time to time, we may enter into a special relationship with another company that is not owned by or affiliated with us to provide or promote joint products, services, applications, or features (together, “Jointly Offered Items”). These special relationships may include co-branded web sites or apps (“co-branded pages”). Any information, including Personal Data, that you provide in connection with one of these Jointly Offered Items, and/or on one of these co-branded pages, will be shared with our third-party partners. You should check these third parties’ web sites for information regarding their privacy practices. PLEASE N OTE THAT THIS POLICY DOES NOT ADDRESS THE PRIVACY OR INFORMATION PRACTICES OF ANY THIRD PARTIES. If you do not want Personal Data about you shared with such third parties, please do not provide Personal Data in connection with the Jointly Offered Items and/or co-branded pages. Third-Party Data Providers. If you subscribe to one of our products or services that contains third-party data, we may be required to provide your Personal Data to the third party as part of our reporting obligations. We will only do so if a third-party data provider conditions your receipt of their data on knowing your identity. Conferences and Events. When you attend a conference or event organized by us, your name and contact information may be shared with other attendees. Promotions. We may share the Personal Data you provide in connection with Promotions with third-party sponsors of such Promotions (irrespective of whether such Promotions are hosted by us), or otherwise in accordance with the rules applicable to those Promotions. Assignment. We may disclose or transfer any and all Personal Data that we collect to an affiliated entity or a third party (and their respective advisors) in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our business, assets or stock (including without limitation in connection with any bankruptcy or similar proceedings). Law Enforcement; Emergencies; Compliance. We may use and disclose Personal Data about you to others as we believe to be appropriate: (a) in compliance with laws, rules, or regulations in any country in which we operate, including laws outside your country of residence; (b) to comply with legal process; (c) if being subject to the investigatory and enforcement powers to the FTC or any other U.S. authorized statutory body and to respond to requests from government or public authorities, including government and public authorities outside your country of residence; (d) to enforce our Site’s terms of use; (e) to protect our operations or those of any affiliated entities; (f) to protect the rights, privacy, safety or property of us, our affiliated entities, you, or others; and (g) to permit us to pursue available remedies or limit the damages that we may sustain. For example, we may, to the fullest extent the law allows, disclose Personal Data about you to law enforcement agencies to assist them in identifying individuals who have been or may be engaged in unlawful activities. Such disclosures may include transfers of Personal Data from one country to another. Your Personal Data may be stored and processed in any country where we have facilities or in which we engage service providers. If you are accessing the Site from outside the United States, you may be sending information, including Personal Data to the United States where our servers are located. That information may be transferred within the United States or back out of the United States to other countries outside your country of residence. Collection and Use of Other Data We and our service providers may also collect and use the following types of data, referred to in this Policy as “Other Data”: Monitoring Data. We and our service providers may collect and/or track other information such as demographic information, domain names, computer type, browser types, screen resolution, and other statistical data involving the use of the Site (“Monitoring Data”). We use Monitoring Data to help us understand who uses the Site and to improve and market it, as well as our other web sites and services. Unless combined with Personal Data, Monitoring Data does not personally identify you or any other user, and we may use it for any purpose. Aggregated Data. We may aggregate Personal Data in a manner such that the end- product does not personally identify you or any other user of the Site, for example, by using information to calculate the percentage of our users who have a particular telephone area code. Such aggregate information may also be used for any purpose. Cookies. To enhance the Internet experience on the Site, we and our service providers may use ‘cookies’ on the Site. Cookies are data that a web server transfers to an individual’s computer for recordkeeping and other purposes. We use cookies and other technologies to facilitate users’ ongoing access to and use of our Site. If you do not want information collected through the use of cookies, there is a simple procedure in most browsers that allows you to automatically decline cookies, or to be given the choice of declining or accepting the transfer of a particular cookie, or cookies from a particular web site, to your computer. If cookies are disabled, however, all features of the Site may not operate as intended. Information about disabling cookies can be found on your Internet browser provider’s web site. The Site may have a Cookie Policy that applies to its use of cookies and other similar tracking technologies. If it does, then the Cookie Policy will apply in addition to this Policy. Tools. We and our service providers may also use various common Internet tools such as ‘pixel tags,’ ‘action tags,’ ‘web beacons,’ ‘.gif tags,’ ‘JavaScript’ or similar technologies (together, “Tools”) in connection with Site pages and email messages in certain formats to, among other things, track the actions of Site users and email recipients, to determine the success of marketing campaigns and to compile statistics about Site usage and response rates. Tools allow us to count users who have visited certain pages of the Site, to deliver services, and to help determine the effectiveness of promotional or advertising campaigns. When used in email messages in certain formats, Tools can tell the sender whether and when the email has been opened. We use cookies and Tools to understand how the Site is used and to customize and enhance the Internet experience of individual users. When you revisit the Site, we may recognize you by a Tool and customize your experience. For example, once you have completed the registration process, a cookie and/or Tool will be used to avoid having you register again. We believe cookies and Tools add value to the user experience. Google Analytics. We may use Google Analytics, which uses cookies and other similar technologies, to collect and analyze information about Site use and to report on activities and trends. The service may also collect information regarding the use of other websites, apps and online resources. You can learn about Google’s practices by going to https://policies.google.com/privacy/partners, and opt out of them by downloading the Google Analytics opt-out browser add-on, available at https://tools.google.com/dlpage/gaoptout. Verification. We may use third-party services to verify that you are a human user. Any information collected as part of such verification is subject to the privacy policy of the third-party service provider. IP Addresses. When you visit and interact with the Site, we and our third-party service providers may collect Internet Protocol (IP) addresses. Your IP address is a number that is automatically assigned to the computer that you are using by your Internet Service Provider (ISP). This number is identified and logged automatically in our server log files whenever you visit the Site, along with the time(s) of your visit(s) and the page(s) that you visited. We use IP addresses to understand how the Site is used by our users, to improve the Site and to enhance user experience of the Site. We may also use your IP address to help diagnose problems with our server and to administer our Site. We may also derive your approximate location from your IP address. Our Adve rtising We may use third-party advertising companies to serve advertisements regarding products and services that may be of interest to you when you access and use the Site, our apps and other websites or online services, based on information relating to your access to and use of the Site and other websites or online services on any of your devices, as well as on information received from third parties. To do so, these companies may place or recognize a unique cookie on your browser (including through the use of pixel tags). They may also use these technologies, along with information they collect about your online use, to recognize you across the devices you use, such as a mobile phone and a laptop. Security We may store your Personal Data. This information is retained and used in accordance with existing laws, rules, regulations, and other policies. While there is no such thing as “perfect security” on the Internet, we will take reasonable steps to ensure the safety of your Personal Data. Personal Data is stored on our server and is not publicly accessible. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we take reasonable precautions and have security measures in place to protect the loss, misuse and alteration of the information under our control. Although we attempt to ensure the integrity and security of our network and systems, we cannot guarantee that our security measures will prevent third-party “hackers” from illegally obtaining this information. We are not responsible for any breach of its security or for the actions of any third parties that may obtain any Personal Data. You are prohibited from violating or attempting to violate security for or otherwise interfering with the operation of the website. We do not make, and expressly disclaim, any representation or warranty, express or implied, regarding the security or integrity of the website and your Personal Data. If you have reason to believe that your interaction with us is no longer secure (for example, if you feel that the security of any account you might have with us has been compromised), please notify us of the problem immediately by sending an e-mail to compliance@everythingals.org . Data Integrity; Retention Period We will use Personal Data only in ways that are compatible with the purposes for which it was collected, authorized by this Policy, or authorized by you. We will take reasonable steps to ensure that Personal Data is relevant to its intended use, and is accurate, complete, and current (as provided by you). We depend on you to update or correct your Personal Data whenever necessary. We will retain Personal Data about you for as long as needed or permitted in light of the purpose(s) for which it was obtained and consistent with applicable law. The criteria used to determine our retention periods include: (i) the length of time we have an ongoing relationship with you; (ii) whether there is a legal obligation to which we are subject; and (iii) whether retention is advisable in light of our legal position (such as in regard to applicable statutes of limitations, litigation or regulatory investigations). Choice; Opt-Out We give you choices regarding our use and disclosure of your Personal Data as follows: If you no longer want to receive marketing-related emails from us on a going- forward basis, you may stop receiving these marketing-related emails by sending an e-mail to compliance@everythingals.org . If you would prefer that we do not share your Personal Data on a going-forward basis with our affiliates or with unaffiliated third parties for their marketing purposes or for the other purposes described in this Policy, you may cease this sharing by sending an e-mail to compliance@everythingals.org . This does not apply to third parties acting as our agents and under our instruction pursuant to a written agreement. If we transfer personal data to a third party acting as an agent, we will: (i) transfer the personal data only for limited and specified purposes; (ii) ensure that the agent is obligated to provide at least the same level of privacy protection as is required by the Privacy Shield principles; (iii) take reasonable and appropriate steps to ensure that the agent effectively processes the personal data in a manner consistent with our obligations under those principles; (iv) require the agent to notify the us if it makes a determination that it can no longer meet its obligation to provide the same level of protection as is required by the principles; (v) upon notice, including under (iv), take reasonable and appropriate steps to stop and remediate unauthorized processing; and (vi) provide a summary or a representative copy of the relevant privacy provisions of its contract with that agent to the Department of Commerce upon request. If you would like to opt-out of your Personal Data being used for a purpose that is materially different from the purpose(s) for which it was originally collected or subsequently authorized by you, e-mail compliance@everythingals.org . We will try to comply with your request(s) as soon as reasonably practicable. Please note that if you exercise the second option as described above, we will not be able to remove your Personal Data from the databases of our affiliates or unaffiliated third parties with which we have already shared your Personal Data (i.e., to which we have already provided your Personal Data as of the date that we implement your request). Further, please note that requesting us not to share your Personal Data with affiliates or unaffiliated third parties may result in you no longer receiving any marketing emails from us. Please also note that if you choose not to receive marketing-related messages from us, we may still send you important administrative messages, and you cannot elect to stop receiving such administrative messages, unless you choose to stop receiving services from us. You may also indicate your choices regarding marketing-related emails by contacting us via postal mail or telephone using our contact information below, or if you have a Site profile/account, by changing your preferences on your Site profile/account at any time. Your Rights You have certain rights over your data: You have the right to be informed, which means that anyone processing your personal data must make clear what they are processing, why, and who else the data may be passed to. You have the right to request an exported file of the Personal Data we hold about you, including any data you have provided to us. You have the right to receive this data in a commonly used, machine readable format. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes. You have the right to have your data amended or corrected. The process for doing that is described later in this Policy. You have the right to restrict or object to further processing of your data You have the right to submit a complaint related to use or collection of you information. Correct; Update If you would like to request to review, correct, update, suppress, delete or otherwise limit our use of your Personal Data that has been previously provided to us, or if you would like to request to receive an electronic copy of your Personal Data for purposes of transmitting it to another company (to the extent this right to data portability is provided to you by applicable law), you may make a request by contacting us by sending an e-mail to compliance@everythingals.org . We will respond to your request consistent with applicable law. For your protection, we may only implement requests with respect to the Personal Data associated with the particular email address that you use to send us your request, and we may need to verify your identity before implementing your request. We will try to comply with your request as soon as reasonably practicable and consistent with applicable law. Please note that we may need to retain certain information for recordkeeping purposes and/or to complete any transactions that you began prior to requesting the change or deletion. There may also be residual information that will remain within our databases and other records, which will not be removed. Links The Site may contain links to other Internet web sites, including social media sites and third- party hosted collaboration tools. These linked sites are not under our control. We provide links only as a convenience, and we does not endorse or control, and is not responsible for, the privacy practices or the content of these linked sites. If you provide any Personal Data through any third-party web site, or choose to communicate with us using third-party collaboration tools or other social media platforms, your transaction will occur on that third party’s web site (not the Site) and the Personal Data you provide will be collected by, and controlled by the privacy policy of, that third party. We recommend that you familiarize yourself with the privacy policies and practices of any such third parties. PLEASE NOTE THAT THIS POLICY DOES NOT ADDRESS THE PRIVACY OR INFORMATION PRACTICES OF ANY THIRD PARTIES, INCLUDING, WITHOUT LIMITATION, AFFILIATED ENTITIES THAT DO NOT POST OR LINK DIRECTLY TO THIS POLICY. Do Not Track Disclosures We do not respond to Do Not Track (“DNT”) signals at this time. Some third-party sites may track your actions when you are browsing and accessing content. Various browsers offer a DNT option that sends a signal to third parties that you do not want to be tracked. Data Controller This Policy applies to Personal Data to the extent EverythingALS is deemed to be a Data Controller of your Personal Data. A Data Controller is a person or entity that determines the purposes and means of the processing of the Personal Data. EverythingALS may also be a Data Processor or may engage third parties to be a Data Processor of your Personal Data. Questions or requests related to your Personal Data may be submitted to compliance@everythingals.org . Cross Border Transfer of Personal Data Your Personal Data may be stored and processed in any country where we have facilities or in which we engage service providers. If you are accessing the Site from outside the United States, you may be sending information, including Personal Data to the United States where our servers are located. That information may be transferred within the United States or back out of the United States to other countries outside your country of residence. We take appropriate measures to secure your Personal Data under these circumstances in accordance with this Policy and applicable laws. By transferring information or allowing information to be transferred to us, you consent to the transfer, processing and storage in countries outside your country of residence. In certain circumstances, courts, law enforcement agencies, regulatory agencies, or security authorities in those other countries may be entitled to access your Personal Data. As further provided in this Policy, our participation in and certification of compliance with the Privacy Shield Principles forms the legal basis for transferring data from certain countries into the United States. Contact Us. If you have any questions about this Policy or the practices of our website, you can e-mail us at compliance@everythingals.org .

All Posts Care Resources Treatments & Protocols Search madhavi35 Oct 14, 2021 3 min EverythingALS Launches “Stories and Innovation in ALS” Podcast PRESS RELEASE Hosts Lisa Pecoraro Deegan and McFinn Lovere Interview Top Researchers, Clinicians, Patients, and Caregivers for an Inside... 135 views 0 comments Post not marked as liked indunavar Mar 29, 2021 2 min EverythingALS Selected to Present at the American Academy of Neurology Annual Meeting, April 17-22 April 16, 2021 (Los Altos, CA) – EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science... 278 views 0 comments Post not marked as liked

Shop EverythingALS Swag Unisex Polo Shirt Price $19.50 Add to Cart Men's Premium Polo Price $22.00 Add to Cart EveythingALS Logo Unisex t-shirt Price $22.50 Add to Cart Unisex Organic Cotton t-shirt Price $22.50 Add to Cart EverythingALS Tote bag Price $24.00 Add to Cart Embroidered Logo Hat Price $24.00 Add to Cart Fanny Pack Price $30.00 Add to Cart White Logo Mug Price $14.50 Add to Cart

Latest News

Courses

There’s Nothing Here... We can’t find the page you’re looking for. Check the URL, or head back home. Go Home

There’s Nothing Here... We can’t find the page you’re looking for. Check the URL, or head back home. Go Home