Archives February 2025

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD volunteer Julie Moore and starting at 10:00 a.m. on Thursday, March 13.

The event will be held at Palmetto Landing Amenities Center and Clubhouse, located at 44304 Palm Frond Drive in Punta Gorda.

Email Julie at [email protected] to RSVP for this event. Download this flyer to learn more.

Calling all AFTD advocates – federal funding for FTD research is at risk, and we need your advocacy to protect it.

Earlier this month, the National Institutes of Health announced that it will drastically change how its grants are funded. This abrupt reduction will slow progress in research focused on FTD and other diseases, as well as threaten the United States’ position as a leader in biomedical research, which has long been an area of bipartisan support.

This is a rapidly evolving situation, and AFTD will keep you posted on new developments as they arise. But for now, please reach out to your members of Congress to ask them to oppose this policy and ensure that research institutions are adequately supported to continue their important work.

Additionally, if you live in California, you can support future research this tax season. The California ALS Research Network Voluntary Tax Contribution Fund allows Californians filing their state income taxes to donate an amount of their choice to help fund critical research projects. Visit the ALS Network website to learn more.

• If your sex drive has diminished, take small steps. For example, take time to simply hold hands with your partner in bed for 5 to 15 minutes, even if you don’t feel like it. This will make your partner feel like you still care about them.
• Try to exercise at whatever intensity level you feel most comfortable. Exercise has been shown to help reduce sexual tension.
• Therapies that involve physical contact, such as massage and reflexology, may help you relax without being overly stimulated. Only use such therapies if they can be done safely and appropriately, however.
• Speak with your healthcare provider about potentially helpful medications, or to reevaluate medicines you currently take.
• Marital or couples counseling can let you and your partner talk through any issues you have.

Danish biotechnology company Vesper Bio announced in January that its clinical trial for a potentially disease-modifying drug for FTD-GRN is proceeding to phase Ib/IIa.

In FTD caused by an inherited GRN mutation, the production of the neuroprotective protein progranulin is suppressed. The protein sortilin contributes to the loss of progranulin by binding to it and targeting it for degradation. Low progranulin levels are associated with neuronal dysfunction and the abnormal accumulation of the protein TDP-43, a key driver of FTD pathology.

Vesper Bio Evaluating VES001 in People with FTD-GRN

VES001 is a novel, orally administered drug that selectively inhibits sortilin, preventing it from binding with progranulin. VES001 can boost progranulin levels in people affected by a GRN mutation through this process.

In September 2024, Vesper Bio announced that it had completed phase 1 studies of VES001 in people without FTD-GRN, which found that the drug was safe and well tolerated by participants. Crucially, the study found a substantial normalization of progranulin levels in participants dosed once or twice daily.

“Progranulin is vital for maintaining neuronal health; however, progranulin levels in asymptomatic people with GRN mutations are typically half that of people without such mutations,” said Vesper Bio co-founder and interim chief medical officer Mads Fuglsang Kjølby, MD, PhD. “Based on the data from our successful First-in-Human trial, we believe VES001 will normalize progranulin levels, and thus has great potential to slow or even arrest FTD-GRN disease progression.”

In the trial’s next phase, a smaller cohort of people with FTD-GRN will receive the experimental drug. While safety and tolerability data will still be collected during this phase, the main goal is to confirm whether VES001 raises progranulin levels in cerebrospinal fluid and the bloodstream. This type of trial, known as a “proof of concept study,” helps scientists determine whether to continue with a specific compound or move their efforts elsewhere.

“It is an incredible achievement by the Vesper team that we have been able to progress VES001 so quickly into this next clinical trial phase,” said Vesper Bio CEO Paul Little, PhD. “We are committed to bringing this important new oral treatment option to families living with FTD where there is no approved therapy available today. We are all striving for a future free from FTD for patients and their families.”

Clinical trials for FTD are being launched at an increasing pace as companies like Vesper Bio further develop experimental interventions and diagnostic tools. If you are interested in participating in research, the FTD Disorders Registry’s Find a Study page can help you find a trial that is right for you.

It’s important to consider the cost of these services, and whether they are covered by insurance. Medicare and private insurance policies often cover short-term skilled home care with a visiting nurse, physical therapist, or occupational therapist, but only after an acute medical event such as a hospitalization or a medically necessary inpatient rehabilitation stay. These services are meant to be rehabilitative and end once the person has met their goals.

Medicare and commercial insurance do not cover the cost of home care provided by home health aides or adult day programs. However, in some states Medicaid waivers or other income-based programs can help cover these costs for qualified families, although you may have to go on a waiting list.

Long-term care insurance policies and veterans benefits can also help cover home-care costs for those who qualify. For others, these expenses must be paid privately. If private home care is considered medically necessary, the costs might be tax-deductible, so be sure to speak with your tax consultant first.

Adult day programs are another community-care option, providing daily care in a group setting with routine, structure, and activities. Some even offer transportation to and from the site. Respite care, meanwhile, is an option that provides short-term home or facility-based care so that family care partners can get a temporary break, and is offered in many states. AFTD offers Comstock Respite Grants to subsidize the cost of this short-term care option.

Your local Area Agency on Aging can provide a list of home care agencies and adult day programs near you, along with more information about respite care, income-based options, and Medicaid waivers. Use the Eldercare Locator, an online tool developed by the federal Administration for Community Living, to find an Area Agency on Aging in your community.

Don’t overlook word of mouth – friends, local religious organizations, and other informal networks can suggest resources. And there may be a support group for FTD care partners in your area, where others on the FTD journey can recommend care options that worked for them and help you navigate the process of obtaining outside care. Use AFTD’s website to find a support group near you.

Since FTD is not as well-known or common as other types of dementia and frequently develops earlier in life, FTD families must often adapt existing eldercare and/or Alzheimer’s-focused services for their loved one’s needs. AFTD provides educational resources that families can share with care providers who are willing to learn about FTD on the For Health Professionals section of our website. Specifically, you can share issues of the AFTD publication Partners in FTD Care so providers can better understand how FTD differs from other dementias.

In a special bonus episode of the “Remember Me” podcast, AFTD Support & Education Director Esther Kane, MSN, RN-CDP, and Support Services Manager Sarah Lopata, MS joined hosts Rachael Martinez and Maria Kent Beers, both former FTD caregivers, to talk about grief and the FTD journey.

Everyone Experiences FTD, and Grief, Differently

FTD disorders are highly diverse in their symptoms, so living with a diagnosis is different for everyone. Similarly, care partners, family members, and friends of people living with FTD experience the journey differently, carrying varied emotions in response to the challenges they experience. As Kane notes on Remember Me, grief can manifest in a multitude of ways that aren’t always apparent.

“I don’t think that people always understand the amount of grief that they’re actually carrying,” Kane said. “I think it’s one of the hardest parts of about the journey. [People say] I’m really mad that this happened, or I’m really sad that this happened, and is that grief? Yes, you’re grieving.”

Martinez said that she was initially angry and frustrated when her father’s FTD symptoms began to show. Not knowing what was wrong, Martinez was “really upset, always – I’d go to bed upset and wake up upset.

“But looking back, that’s when…I knew what was going on,” she continued. “I knew he was changing, I knew I was losing pieces of him, but I couldn’t bridge the gap between that and feeling” upset.

Beers, meanwhile, speaks about getting a diagnosis for her mother – the finality of it, and the emotional weight it delivered.

“I remember the plastic chairs and just the look in the doctor’s eyes and…I just don’t even remember anything that happened after that moment, like walking to the car,” Beers said about the day her mother was diagnosed. “When the trauma started, the grief kicked in.”

It Helps to Have Difficult Discussions Early

FTD’s symptoms severely limit one’s ability to continue driving, working, traveling, or even participating in family events. Loved ones of the person diagnosed thus often find themselves grieving life plans, family milestones, or career goals that they know will go unfulfilled. Grief can also create (or exacerbate) familial conflict as dynamics and relationships change. For these reasons, Kane says that it is important for families to discuss how to approach FTD.

“If I was going to give any advice, it’d be to have these conversations [early] with your [family],” said Kane. “If you can, start to talk about how would [you] want to manage if mom or dad got sick. What would [you] want to do?”

It is also important to discuss as early as possible what the person living with FTD wants in terms of medical care and long-term legal and financial planning, since they will not be able to advocate for themselves as their symptoms progress.

The episode emphasizes forgiving yourself as you navigate the FTD journey. As family members learn more about FTD, they may feel guilty about their past frustrations with their loved one’s symptoms. For example, when Beers told her mother that she was pregnant, she responded by asking if they could go to the store, making Beers feel as if she didn’t care.

“Then we were talking to an expert at the Penn FTD Center…and she was like, your mom had PPA…she probably did not understand what you said to her,” Beers said. “Nobody wants that to be what happens when you tell your parent they’re going to be a grandparent. But I just didn’t know; I didn’t know the disease.”

Learning to separate the disease from her mother helped Beers contextualize her behavior. “It’s the disease,” she said. “It’s not your mom, because you know she cared.”

Click here to watch the full episode.

Are you navigating FTD on your own? Do you have questions, or simply need someone who gets what you’re going through? AFTD’s HelpLine can guide you as you navigate all stages of the FTD journey; contact the HelpLine at 1-866-507-7222 or [email protected].

When someone is diagnosed with FTD, it is almost guaranteed that they will eventually have to leave their job, usually long before they are ready to do so. The abrupt end of one’s career can cause depression (our jobs contribute significantly to our sense of self-worth) and stress (how will I pay my bills now?). It can also result in profound guilt: feeling like you are no longer a “productive member of society” is a heavy emotional burden to bear.

If you are currently navigating this situation, know that these circumstances are not your fault — you’re doing the best you can within a deeply challenging situation. Here are some suggestions to help you work through this new phase of your life.

Acknowledge Your Feelings

Recognize that guilt, anger, and sadness are all natural responses to major life changes, particularly when they impact your loved ones. Allow yourself to feel these emotions without judgment. It can help to write them down, or talk about them with someone you trust.

Reframe the Situation

Shift your focus from what you feel you’ve lost to what you are still contributing. Your presence, love, and emotional support are incredibly valuable. Helping others can be a great way to deal with the grief of your FTD. Although you may no longer have a job, many organizations are looking for volunteers just like you.

Communicate Openly

If your guilt stems from how you believe your loved ones are affected by your FTD diagnosis and subsequent job loss, have open conversations with them. You may find they are more understanding and supportive than you thought.

Set New Goals

In the absence of your career, small yet meaningful actions can help rebuild a sense of purpose. Identify ways to adjust your contributions, whether emotional, practical, or even creative. Maybe you once donated regularly to a favored nonprofit, but no longer have disposable income following your diagnosis. If that is the case, you can still donate your time as a volunteer. At many organizations, volunteering is just as valuable as your monetary support.

Seek Support

Consider joining support groups for individuals living with an FTD diagnosis. Sharing your experiences with others who understand can reduce feelings of isolation and guilt. AFTD offers multiple ways to access support – reach out to the AFTD HelpLine for more information.

Professional counseling or therapy can also help you process and let go of guilt.

Practice Self-Compassion

Remind yourself that you didn’t choose FTD – it just happened. Treat yourself with the same kindness and understanding that you would offer a friend in your position. Practicing compassion on yourself is just as important as practicing compassion on others.

Engage in activities that bring you peace, like meditating, expressing your faith, going on nature walks, or taking part in your favorite hobbies. Remember that managing your health is a priority, and taking care of yourself is not selfish – it’s essential.

Focus on Financial Strategies

If financial stress is adding to your guilt, explore resources or benefits that might be available to help. If possible, consult a financial planner or advisor to help make the most of your current income and plan for the future. Organizations like AFTD may offer guidance – contact the AFTD HelpLine to learn more.

AFTD’s Quality of Life Comstock Grant helps people living with FTD access services or supports to improve their quality of life. Applicants with a documented FTD diagnosis may apply for a $500 grant that can be used (with the support and supervision of a primary care partner as necessary) to purchase the goods or services of their choosing.

Finally: Remember that it’s OK to ask for help, and it’s OK to take things one step at a time. Your value as a person is not determined by your income or productivity, but by the relationships and impact you have on those around you.