By James Kinneen
Hometown Weekly Reporter
To date, Tara O’Brien (Pacella’s) ALS charity, 4youIwillfight, has raised over $100,000 that she has given directly to the Healey Center at Mass General Hospital, ALS One and Compassionate Care ALS. When Tara started this effort on January 6 this past year - the very day she was diagnosed with ALS - the idea was to create hope for her children by getting them involved. Much of the media coverage is focused on high school sports, from a February unveiling of a special Walpole hockey uniform to getting the high school students involved in the ice-bucket challenge.
Tara hadn’t anticipated so much support from her children’s friends in this fight - but when you raise varsity athletes and good kids, what else should you expect? They certainly have used their platform to get the word out. With that, there's one pressing question specific to the COVID era: whether 4youIwillfight will be negatively impacted by the fan-less gyms and the general uncertainty as to whether high school sports will be able to play full seasons.
Tara rejects this notion, arguing “we have established a base of support and brand. These kids wear that brand with purpose, to be the generation to find the cure.”
But that’s not to say COVID-19 and the subsequent lockdowns haven’t impacted both Tara personally, and 4youIwillfight as an organization. For Tara, having noted in the Boston Herald on February 27 that she hoped to be able to walk when she went on her daughter Sophia’s trip to the Bahamas, she saw the trip get cancelled due to the coronavirus. And for the organization, some of their fundraising events fell by the wayside.
“COVID and the pandemic has impacted us for sure," she explained. "We had plans for an in-person fundraiser in May of 2020 that has been put on hold indefinitely. We had collected several auction items for that event that we are now raffling off online (www.tiny.cc/auction4uiwillfight) to keep the donations coming in. As with all organizations, we don’t know what the future will hold in terms of in-person events, but we will not stop our efforts while we wait to find out.”
On the bright side, COVID did allow Leslie Brown, a local Walpole photographer and close friend of Tara’s, to raise money for the organization via the Front Porch Project. The big advantage of the charities 4youIwillfight chose (and the reason they chose them) is because they are not bloated, with the donated funds being used efficiently.
“We are committed to giving 100 percent of our proceeds to organizations that are focused research and patients’ care, and also ensure that the funds they raise are not diluted with overhead. That led me to select Healey Center at MGH, ALS One, and Compassionate Care ALS as the three organizations that represent these ideals. We are also in the process of supporting IamALS as we move to support the much-needed congressional involvement for legislation advancement for ALS.”
Aside from raising funds, the congressional involvement is something everyone involved with 4youIwillfight is deeply invested in. On Twitter, Tara’s sister, Colleen O’Brien, wrote: “There is a bill before Congress called HR 7071 this will give ALS patients access to drugs without waiting years that we don’t have.”
With ALS being a terminal illness, one would think “right to try” would cover this issue. But Tara’s husband, Christopher Rull, who has spent the last 20-plus years as a professional in biopharmaceutical product development, explained it’s not that simple.
“Right to Try is not so straightforward, and only a tiny piece of the spectrum of Managed Access Programs for drugs of all types,” he said. “In the case of ALS, we have a complex disease, where we can equate the research progress to that of oncology almost 20 years ago. Right to Try requires that the therapies involved show demonstrative improvement beyond current therapies and are inaccessible to patients otherwise. In ALS, we struggle with what that progress needs to look like, because the complexities of this disease impact each patient uniquely and its complex involvement of upper and lower motor neurons. This is one reason why Right to Try is hard to apply to ALS.”
Sponsored by Jeff Fortenberry, a Republican Congressman from Nebraska, HR 7071, known as the “Accelerating Access to Critical Therapies for ALS Act,” unfortunately needs more sponsors to be introduced to Congress and voted on. Rull believes getting it passed is hugely important, because such a small percentage of those dealing with ALS are able to access new drugs.
“What the ALS community is asking with HR 7071 is that we put some additional structure and guidance around the concepts of Right to Try and Managed Access and fund the ability for ALS patients to participate in research on products still under review by the FDA. The patient safety will still be monitored by neurologists and the FDA, but patients who want to participate in research and who want to try to extend their life may be able to for the first time. As of today, less than 3 percent of our 30,000 afflicted patients in the U.S. are able to effectively access research channels and new drugs. This legislation will allow the research to expand and the hope to find a cure could become a reality”
Tara and Chris encourage everyone: “If you’d like to help by writing a letter to Congress, please reach out at [email protected].”
Tara was also working to fight ALS before her diagnosis. She helped raise money for Tom Wong, another Walpole resident with ALS who was friends with her children. Tara has become friends with Tom’s wife, Sandra, and noted that Tom’s daughters have been very supportive of her and her children.
An ALS diagnosis radically changed Tara’s life, completely altering and impacting a planned future. But while COVID-19 threw a wrench in everyone’s plans, O’Brien and 4youIwillfight would not - and will not - let it get in the way of her mission: finding and funding a cure.
Follow 4youIwillfight's journey on Facebook and Instagram (@4youiwillfight).
